Your name: Ryan Wilkinson
Occupation: Tax Director @ BHP, Chartered Accountants
Tell me about your heart hero:
“My heart hero is Vinnie (my son) who is now aged 4 who was diagnosed with Dilated Cardiomyopathy. Thankfully the condition is managed with medication, and no surgical intervention was required.
“The experience in LCHU was a roller coaster. Vinnie’s condition was brought about as a result of a viral infection (yes, a viral infection can cause DCM – I didn’t know that was possible until all of this). In August 2024 we went to the walk-in centre, as Vinnie really wasn’t being his usual cheeky self, who sent us to A&E from there we found out that Vinnie’s heart was too big and that’s when our nightmare began.
Blood tests, IVs, cannulas, these were part of our everyday routine – Vinnie asking “why are these people hurting me?” The hardest thing we have ever had to endure as a family.”
How did CHSF help?
“Sprinkled amongst all of these horrible moments, were the good bits – isn’t that a funny thing, that during a time where your child was incredibly poorly that there are some fond memories?
“Things like Vinnie being able to go and feed the fish on the ward, which is provided by CHSF, being able to play with his little brother in the play room, the ice cream he could have and the wellbeing trolley – a packet of crisps made all the difference. The fact that CHSF and the team on the ward were there as a shoulder to cry on, you could have a laugh and a joke with.
“CHSF were invaluable in our process, in a way we were “lucky” Vinnie’s condition did not require surgery, and we were in hospital for only 3 weeks; further we live in Leeds so we had our network, could go home (my wife and I did shifts at LGI).
“But there was one moment which has stuck with me forever – CHSF offer food vouchers for the Tesco at LGI, this allows parents to get a few essentials at Tesco as living in hospital is very expensive. I overheard one mum having to ask the charity for a voucher for the local Tesco as she hadn’t been paid yet, and was on her fourth week in hospital; if living at hospital with a very poorly child wasn’t enough stress, worrying about being able to feed herself must have been horrific, thankfully CHSF were able to help her.”
Why did you want to join the Board of Trustees at CHSF?
“Its not often that you feel forever indebted to an organisation/a person but I am indebted to CHSF and ward L51. They played a crucial role in saving our son’s life. Whilst the medical team were crucial in this, so were the play team, the family support workers – those small actions which made us smile, the sunshine in the storm, that one good thing you could hold onto to get through a tough day. I need to be able to help ensure that all families who go through something like we did, have the support.”
What professional skills and personal insights will you bring to the Board?
“As a heart parent, I have walked a mile in those shoes – this means that I can input into any strategic decisions to ensure that family’s are at the charity’s heart (no pun intended). As well as being a heart parent I am a chartered accountant and chartered tax adviser, this allows me to input into the financial health of the charity offer constructive challenge on decision making to ensure that our resources are well looked after.”
Find out more about our charity trustees
Your name: Jason King
Occupation: Group Head of People @ Westfield Health
Tell me about your heart hero:
“My heart hero is my daughter, Amelia, who is currently 18 months old. Amelia was diagnosed with Tetralogy of Fallot before birth and had open heart surgery at 6 months at Leeds Congenital Heart Unit. This was an incredibly difficult time for our family, and CHSF and team at LCHU were there for us – offering practical, emotional, and financial support when we needed it most.
“The weeks and months after our scan we had lots of support from Marie and the rest of the amazing specialist nurses at LCHU, along with team based at the Sheffield Children’s hospital. Navigating such unknowns was a real challenge, but both my wife and I will be forever grateful for the support and care we had during this time.
“From the wellbeing trolley during our stay in intensive care, to accommodation, and the compassionate support from Lucy and the team; CHSF made an enormous difference during the most emotionally and physically draining period of our lives. My wife has since attended a Cardiac Café event in Sheffield, which gave her space, reassurance, and connection with others who understand what life after surgery can look like.
“One moment that truly stayed with us was when Amelia received her certificate and Katie Bear after surgery. That small gesture meant the world; it reminded us that we weren’t just another case in a system, but a family being cared for by people who genuinely understood what we were going through.”
Why did you want to join the Board of Trustees at CHSF?
“I wanted to join the Board to give back to the charity that provided my family with such vital support during a critical time. I feel such a strong connection to CHSF’s mission. I am honoured to give back as a trustee and help guide the charity’s future so that other families, like mine, can feel the same compassion, support, and strength at their most vulnerable time. I am committed to helping CHSF continue to make a meaningful difference in the lives of children with heart conditions and their families.”
What professional skills and personal insights will you bring to the Board?
“Professionally, I bring extensive leadership experience in HR and organisational development, with a focus on strategy, team management, inclusion, wellbeing, and people engagement. I have a MSc in HR along with being a member of the CIPD. Personally, as a heart dad of a child who has received life-changing care, I bring insight into the challenges families face, the importance of compassionate support, and a dedication to ensuring the charity’s resources make the maximum impact.”
Find out more about our charity trustees
Jess and Callum, parents to heart warrior Louie, organised a Family Fun Day in August this year August.
To raise even more funds for CHSF, friends decided to also incorporate a sponsored bike ride too!
Jess told us a bit more about Louie’s story and how it inspired their family to fundraise for CHSF…
“On 22nd November 2024, our beautiful boy Louie was born. We had no idea what lay ahead.
“Just two days later, we noticed Louie breathing rapidly. Instinct kicked in – we called his Nannie, who didn’t hesitate. We rushed him to A&E. The first doctor reassured us he was fine, but thankfully a second doctor immediately realised the severity and rushed Louie into resus.
“He was treated for suspected sepsis, but things didn’t add up. Later that night, our world changed when doctors told us there was something wrong with Louie’s heart. Around 4am, we were blue-lighted to Leeds Children’s Hospital by the incredible Embrace transport team. It was terrifying.
“At Leeds, we learned Louie had Total Anomalous Pulmonary Venous Drainage (TAPVD) – a rare congenital heart defect where the veins carrying oxygen-rich blood from the lungs don’t connect properly to the heart. It causes dangerously low oxygen levels and can quickly lead to heart failure if untreated.
“At just 4 days old, Louie needed open heart surgery. He was placed on a ventilator in Paediatric Intensive Care Unit (PICU), where he stayed for weeks. One night, we received the call every parent dreads – our little boy had to be resuscitated.
“Eventually, Louie was moved to High Dependency on the children’s heart ward (L51), though complications meant he was often back in PICU. He also needed further surgery to have his diaphragm sewn down.
“That first Christmas was spent on Ward L51. Nannie brought homemade Christmas dinner and treats – we tried to make it special despite everything.
“We were discharged on 27th December, but within just 30 minutes of being home in Scunthorpe, Louie declined again. We rushed back to our local hospital and were admitted to HDU. Just days later, the Embrace team returned us to Leeds.
“Louie seemed to be improving, until tests revealed he needed another life-saving surgery – to remove part of his left lung and repair his heart again. There was no ‘plan B’. Within an hour of hearing the news, he was in theatre. Our family rushed from across the country to be by our side.
“Thirteen hours later, the call came: Louie had survived. He was critical but alive.
Step by step, Louie fought through – ventilator off, drains out, pacing wires removed, chest finally closed. He moved from PICU back to L51, and later to the respiratory ward. With only a quarter of his left lung remaining, he needed extra time and oxygen support.
“On 17th March, after nearly five months in hospital, we finally brought Louie home – for real this time. He came home with oxygen and an NG feeding tube, but he was home.
“Since then, Louie has continued to amaze us. His oxygen levels are improving, and we’re hopeful the feeding tube won’t be needed for much longer. He’s started weaning and loves his food – each step is a little miracle.
“This journey has tested us more than we could ever imagine – but through it all, Louie has been our light. A warrior. A miracle.
“We are endlessly thankful to everyone at Leeds Children’s Hospital, Children’s Heart Surgery Fund (CHSF) and every doctor, nurse, porter, cleaner and support staff who carried us through.”
Lauren Procter, CHSF Community Fundraiser said:
“Jess’ family and friends really got behind their fundraising goals and it certainly shows. We are so thankful for this amazing amount raised – £8,405 currently on their JustGiving page! If any other heart families would like to know more about organising your own fundraiser, get in touch with the team as we’re on-hand to help and support!”
Feeling inspired?
Have you got a fundraising idea or want to chat through how you can help CHSF? Drop us an email at info@chsf.org.uk!
As part of our Because of Carin campaign, celebrating the incredible career of Carin van Doorn, Billy’s family share their memories of her support.
Carin performed two life-saving heart surgeries on Billy – and their words show just how much her care and dedication meant to them.
Mum Charlotte said:
“Carin performed two open heart surgeries on our son Billy, the first as an emergency procedure when he was just over 2kg at four weeks old.
“I will never forget meeting her in a frantic and panicked situation as she was called in to operate on Billy. We had less than 5 minutes with Carin where she calmly explained Billy had a 50/50 chance of survival, before us having no option but to trust her with our baby.
“You may assume in these situations you won’t see the surgeon again other than for a brief follow-up, but after a 7 hour surgery (very late at night) Carin was back on PICU monitoring Billy whilst we sat by the bedside – and she returned every day, checking every part of his care.
“The second surgery, Billy was eight months old which was a complex reconstruction. Carin sat with us in our hospital room with a model of the heart, explaining in so much detail what she was planning to do. She answered all our questions and concerns. Without her, Billy simply would not be with us today.
“Carin’s care and attention for all her patients is profound, and she has dedicated her entire life to this service – performing over 200 surgeries a year across her 30 year career. She also does pro-bono work abroad annually with charities overseas, completing surgeries on children in deprived countries. There is no doubt she is leaving a legacy behind her.
“I could go on and on speaking about this remarkable woman but there is nothing I can do or say that would recognise the gratitude we have that Billy was under her care.
“It’s people like this who deserve to be recognised and remembered for their sacrifice, commitment, dedication and teaching of something that simply saves lives.
“Congratulations Carin, you deserve everything that retirement brings, and we celebrate you!”
After more than 30 years in congenital cardiac surgery and over a decade leading the team at the Leeds Congenital Heart Unit (LCHU), Carin van Doorn OBE will soon be retiring.
After dedicating her life to children’s cardiac care, we want to ensure that Carin’s legacy at Leeds lives on after she retires. You can help us do just that by donating to the ‘Because of Carin’ appeal.
To find out more about the ‘Because of Carin’ fundraising appeal, click here.
Heart mum Charlotte found out at her 20-week scan that her little boy Seth had Transposition of the Great Arteries.
Charlotte told us about Seth’s journey through treatment at the Leeds Congenital Heart Unit and how he is faring back home in Chesterfield.
written by mum Charlotte
We had three scans prior to the 20-week scan so we went into the scan room feeling confident that everything was ok.
When the sonographer stopped on his heart and told us they needed to fetch a doctor, we were shocked.
The doctor confirmed they also could see a defect and discussed with us what Transposition of the Great Arteries (TGA) is and that our baby would need surgery shortly after birth at Leeds.
Because it was a bank holiday we waited a week to see the cardiologist in Leeds to confirm what our local hospital had seen.
I remember hoping for that whole week that they were wrong and he was fine, but when we went for our appointment the cardiologist confirmed the same.
Seth was diagnosed with Transposition of the Great Arteries (TGA) at the 20-week scan in Chesterfield and had life-saving open heart surgery in Leeds at just 9 days old.
A balloon septostomyAt that point they could see no other defects but as he grew bigger they were hoping they would find an Atrial septal defect (ASD) as well, which would mean oxygen would mix more into the blood. As the weeks progressed it became clear that he only had TGA and he would have very little oxygen mixing.
We live over an hour away from Leeds and there was concern over me going into labour early, so an elective caesarean section was booked in at 38 weeks so the team could be ready to perform Seth’s balloon septostomy after birth.
is a procedure that widens a natural or congenital opening in the wall between the heart’s upper chambers using a balloon-tipped catheter. It is performed to increase the mixing of oxygenated and deoxygenated blood, improving blood flow and oxygen levels for babies with certain congenital heart defects. The procedure is a temporary measure to improve the patient’s condition until they can undergo their main surgical repair.
On the August 19th we travelled to Leeds for the C-section. Seth was born screaming but he desaturated very quickly and needed to be resuscitated and ventilated.
I just saw a glimpse of his hair before they rushed him away – my partner was able to go with him whilst I was stitched back up. I was really lucky to have a wonderful anaesthetist that kept my spirits up and supported me whilst I was alone in theatre.
The team then performed Seth’s balloon septostomy, and I was informed it went to plan. It was several hours before I could go to see him in the Neonatal Intensive Care Unit (NICU).
Nothing prepares you for seeing your baby attached to all the machines. I thought I had done enough to prepare for that moment – I’d contacted several parents in a similar position and spent hours on support pages and Google, but seeing my own child in that position, not knowing what the future would hold for him was the most awful feeling.
I wanted to celebrate his birth but I felt like I shouldn’t. He was doing well but I didn’t want to tempt fate. I struggled with telling people he was born, for the same reason.
Seth spent the first few days in NICU – he progressed off his ventilator and could be moved to the High Dependency Unit (HDU) there. He became very jaundiced and needed phototherapy but again, he did well and eventually after another three days he moved onto HDU on the children’s heart ward (L51) where he worked on gaining some weight before his surgery.
On day 9 he had his arterial switch. We walked him down to theatre at 8am and there are no words to describe the feeling of leaving your baby in theatre – not knowing if you would see them alive again. We had watched him look as though he was getting better, he looked so healthy the morning of surgery which made it so much harder but we knew the symptoms were being treated and ultimately he needed the surgery.
Carin van Doorn was Seth’s surgeon, we are so pleased that he had the best surgical team. We can’t thank her enough for what she’s done.
Eight hours later we got the call to say that he was doing well and we could go see him in the Paediatric Intensive Care Unit (PICU).
Those eight hours were the longest hours of our lives. We had tried to distract ourselves and go into the city centre but somehow the noise made us feel worse and we decided to stay close by in the hospital instead. I was so scared to answer the phone but equally was scared to miss the phone call.
The surgeon explained that there had been an issue with one of his coronary arteries but they got a good result in the end. They left his chest open in case they needed to go back in to resolve anything but the day after everything was still looking good so they decided to close his chest.
After only three days on PICU he stepped back onto HDU.
Seth’s weight continued to decline over the coming days. We went out to buy smaller clothes for him as he was now smaller than he was at birth. He was tolerating his feeds well through his NG tube but still continued to lose weight so it was decided he would start on a high energy formula with extra calories to help him gain some weight.
I struggle with agoraphobia and the idea of being over an hour away from all my family and friends, alone in hospital was enough to set off my panic attacks. CHSF helped us by putting my partner into the parent accommodation, so I didn’t have to be alone.
We had been paying for hotels prior to this, but couldn’t afford to keep on. We had been left a support pack, so I contacted the Family Support team on the email provided. We were so grateful to hear back the same day and have one less stress off our minds by being able to stay in CHSF’s Brotherton Wing accommodation.
We can’t thank CHSF enough.
Seth’s recovery from surgery went well, his scans were all looking good – so the last hurdle was weight gain and hopefully the removal of his NG tube. We transferred to our local hospital to be closer to home and finally on day 21 we were able to go home – as he was free from the NG tube and gaining weight.
Seth’s recent echos are all really good and his weight gain is continuing. He is still having regular blood tests at our local hospital for high calcium and iron but the levels are reducing each time so fingers crossed that on the next results he’s back to normal! He’s still taking diuretics but again, hopefully at his next echo he can stop them.
He is loving being at home with his big sister Belle and his little furry sister Bonnie. We are so glad to be home as a family and so thankful to everyone involved in Seth’s care.
We will be forever grateful.
After more than 30 years in congenital cardiac surgery and over a decade leading the team at the Leeds Congenital Heart Unit (LCHU), Carin van Doorn OBE will soon be retiring.
After dedicating her life to children’s cardiac care, we want to ensure that Carin’s legacy at Leeds lives on after she retires. You can help us do just that by donating to the ‘Because of Carin’ appeal.
To find out more about the ‘Because of Carin’ fundraising appeal, click here.
Nelly was born in February 2024 after a ‘normal’ pregnancy, but within hours her parents were facing unexpected news.
Now, one year after her open heart surgery she is celebrating her first “heartiversary” – Nelly is thriving, and her family have raised over £11,000 for Children’s Heart Surgery Fund in her name.
written by mum Philippa
Nelly was born 15th February 2024 after normal scans, a normal pregnancy, no concerns. We were all so excited to start life as a family of four.
As soon as she was born, the room went quiet. I’ll never forget the words “she has a small chin”, and thinking what does that mean? We were allowed to hold her, but she was soon taken away to be checked over by the doctor in the room next to us whilst we waited on the recovery ward.
The doctor came back and told us Nelly had a cleft palate and someone from the cleft team would come and visit us shortly.
A few hours passed by, and the cleft nurse came to visit. She told us all about Nelly’s cleft palate and what that meant for her, but that she also had something called ‘Pierre Robin Sequence’.
Nelly had life-saving open heart surgery at just 7 months old at the Leeds Congenital Heart Unit. One year later, Nelly is celebrating her first heartiversary.
Along with a very small chin and cleft palate, she also had a very small tongue. She would need specific bottles for feeding, required cleft palate surgery around the age of one – but the main concern was her small tongue potentially blocking her airway.
The first night on the ward she stopped breathing five times and turned blue.
In the morning the nurses from the Neonatal Intensive Care Unit (NICU) came over and explained due to her airway issues she wasn’t safe to be left unattended and needed to be rushed straight to the neonatal unit. Over her first week things progressively got worse.
After a number of consultants seeing her and tests being done, we were pulled into a side room to be told that it was likely Nelly had some form of genetic syndrome. She has a number of medical issues that were not the ‘norm’, and they confirmed Nelly had Tetralogy of Fallot (ToF), a type of congenital heart disease.
We were told she would require open heart surgery at a young age and without the surgery, she wouldn’t make it past the age of two.
After a month in NICU between Burnley and Leeds Children’s Hospital, Nelly was allowed home. Every week there were hospital visits to see various consultants as well as regular visits from nurses from different teams to the house.
At three months old Nelly started to have severe sleep apnoea so was readmitted into Leeds where she had her first general anaesthetic. We were told at that point she had a grade 4 airway and would need to be put on a ventilator throughout the night to stop her oxygen dips from happening.
In September 2024, at seven months old Nelly went in for her heart surgery.
Getting the phone call to say she was in PICU (paediatric intensive care), that we could go and see her, and everything had gone to plan felt like all the weight in the world was lifted off our shoulders. We had our baby back and she was ok.
Since her heart surgery, Nelly has had her cleft palate repair and been diagnosed with a rare genetic condition called ‘Catel-Manzke Syndrome’. She is now exactly one year post-op and is a thriving, funny, loving and a very sassy, independent little girl.
We’d like to say thank you to all teams involved in Nelly’s medical journey so far – with an extra special thank you to Suzanne Dickins our Cleft Nurse Specialist, and Rachel Lyles our Community Children’s Nurse.
If it wasn’t for the cardiology team and specifically Carin van Doorn, we might not still have our little Nelly with us here today, and we want to do everything we can to ensure families in similar situations to ours get the same level of care and support in the future.
Throughout this time, Nelly was provided with daily essentials such as nappies, washing facilities and formula, and as soon as she was alert enough, was provided with suitable toys to keep her distracted and an iPad to keep her entertained. She was also given a Katie Bear, certificate and medal from CHSF (as shown below) – not to mention all of the medical support and machines monitoring her sats, as well as 24 hour nursing care.
As parents, we were provided family accommodation in the hospital grounds, free parking during her stay, food vouchers were made available for local supermarkets, activities to keep our minds busy and continuous ongoing emotional support.
As a huge thank you to the cardiac team at LGI, we have this year been raising money for Children’s Heart Surgery Fund.
We’re so grateful to Nelly’s family for sharing their story and fundraising for CHSF in Nelly’s name.
After setting out to fundraise £1,000 in 2025 they have now reached a phenomenal £11,716 to support our heart unit, patients and families. We are so thankful. Thank you all! #BecauseOfYou
If you’d like to donate to ‘Nelly’s Grand 2025’, you can do so here: www.justgiving.com/page/nellys-chsf2025
CHSF exists to support local heart warriors and their families. Empowered lives, because of you. There is no better way to explain our charity than using a powerful story – like yours.We can only keep being there for our life-saving heart unit, patients and families with your help. Make a donation today to help us continue our vital work.
Louie’s journey through complex heart surgery has been nothing short of extraordinary.
In this blog, Louie’s mum Emily shares the story of their time in hospital, the incredible care they received and the strength their family found through the toughest of times.
“On 8th April we woke up knowing that our boy was critically ill…we knew his heart was failing and we knew from the very beginning our Louie couldn’t be fixed and was undergoing a series of palliative surgeries to simply prolong his life.
“That day the lead cardiac surgeon sat us down and told us she wanted to do the impossible and try and save my boy. She wanted to take a chance on Louie – to give him a chance at life.
“Carin van Doorn had watched Louie’s progress and studied him since birth. She had already saved him twice with two heart surgeries performed with Mr Ali Al-Surraf (a magnificent heart surgeon whose presence alone has always made me smile from day one) .He always said he would find a way for Louie. They now had a plan to go in for a full repair with an 80% survival rate.
“I lay my precious boy on the operating table yet again knowing his heart needed to stop beating on bypass…putting his life in this incredible team’s hands with only hope and prayers it would beat again.
“14 painfully long hours later, on 9th April our boy’s surgery was complete. An extremely complex cardiac repair and they did the impossible. They changed history that day with my boy and gave him the greatest gift of all…life.
“Transposition of the great arteries, hypoplastic aortic arch, straddling tricuspid valve and a complex VSD sat between the bottom and top ventricle. Multiple other VSDs. HLHS. He now has near enough a full repair. He may need some tweaks in future with a leaky valve, but we’ll tackle that when/if the time comes. For now, he’s in the safest position he’s ever been in.
“Post surgery my Louie needed a further open heart surgery to fit a permanent pacemaker to support his heart. This was fitted by the lovely surgeon Mr Giuseppe Pelella, yet again another amazing human who has been involved from day dot.
Louie spent his first 6 months in hospital, being cared for by the Leeds Congenital Heart Unit team and Children’s Heart Surgery Fund
“They say it takes a village to raise a child; well, it took a whole hospital to save mine!”
“Afterwards my Louie had it rough. He has suffered two bleeds on his brain and possible sight impairment secondary to the area of the bleed. He had a chylothorax, pneumothorax, a blood clot in his jugular, infections, NEC, brain damage…the list goes on. But Louie being Louie is defying all odds yet again, showing substantial improvements daily! Because that’s what we do, it’s who we are, who we’ve made ourselves be – we dig deep and pull strength back every single moment of this journey.
“After 24 days in intensive care with multiple severe complications he was back on the cardiac ward being the incredible, strong, little soul he’s always been. There is one thing I know for sure – there is nothing my boy can’t do; there is nothing these surgeons can’t do! Louie’s team – his cardiologist Dr Bissell has never given up on him from the very beginning, his nurses and the love they show, they all are the greatest superheroes. Far too many incredible souls to mention in that building who all love and care for Louie dearly. Always rooting for our boy, and we’re always rooting for you!
“We will never be able to repay Carin van Doorn for taking that chance on our boy, for believing in him and for changing our lives forever. For believing in herself and having confidence in the process. For giving him the chance at life he deserves, the surgery he always deserved and fought so hard for.
“A nurse said to me ‘I never really believed in God… but if there is one it’s Carin van Doorn’. The woman that saved our baby boy. That quote will sit with me whole heartedly forever. So, here’s to your road of recovery little Louie – to a long, happy and meaningful life!
Louie was born via emergency caesarean section in Rotherham and his care was transferred straight to the specialist heart centre in Leeds
The early days
“But this isn’t where our story started or ended. Louie had been an inpatient since he was born waiting for this day. With just two weeks respite at home in between to spend time with his family.
“Tuesday 17th December our beautiful boy arrived earthside, from an extremely complicated labour into a cat 1 emergency section. Our boy was born needing significant heart surgery, fighting for his life. He was rushed straight to Leeds under the paediatric cardiology teams where he fought every second of every day, blowing us all away. Me and baby were both fighting sepsis on top of my boy’s heart and kidney defects.
“Leeds General Infirmary transferred my care straight to them from theatre in Rotherham via ambulance to keep us together. Louie travelled with his dad through Embrace and I went in my own ambulance.
“Our precious fighter went through his first heart operation within hours of being born and he came out of the other side like a warrior. He was looking at several bigger open heart surgeries in the coming weeks to save his life, which we had no doubts at all he would pull through. In the meantime, the ventilators and all the machinery were doing an incredible job.
“We cannot put into words how much we appreciate every single one of his surgeons, doctors and nurses – they loved him as much as we did, right from the beginning. Louie is made of the purest, strongest of souls and we knew then he would fight through anything they threw at him, and nobody could tell us any different. We were behind him every step of the way, my perfect child – sent from our angels in heaven. We didn’t get this far to give up now. We prayed and prayed for our boy to pull through posting on socials: ‘Me, Andy & our girls stand with open arms hanging onto all the love and prayers being sent our way. We need every single one of them‘.
“How Louie’s dad coped going from me in 1:1 high intensity care, to our boy in intensive care on the neonatal ward, giving us both all the love we needed is beyond words of courage and love – he’s the most incredible father to our little boy already.
Life in hospital
“Little did we know this was the start of a 5 month journey in hospital – of sorrow and strength. 5 months of my family being broken, living apart and isolated. My biggest two girls, Tilly (11) and Evie (12) went to live with their dad and his partner. My little Nellie (6) went to live with her dad, Nannan and grandad. We thought it was just a short-term fix. It is so admirable how all three of my girls have drawn the strength to power through all this and be understanding enough to know Louie needed us living in Leeds.
“I’ve never felt pride for any of my kids like this. Meeting their brother for the first time should have been a magical moment. Instead, he was laid down, fighting to be alive. My girls told me they had to be brave and come see him, as they wanted to make sure they had met him. They are words so humble and strong, that no parent should hear.
“We soon came to the conclusion my Louie was writing his own story. This wasn’t a straight motorway trip. This was a journey of windy roads and curves. Stopping off for a rest on the way at every stop he could make – and scaring his mum and dad to their core!
“You make a decision. A decision of hope. A decision to make hope a choice, and once you have made that choice, hope then becomes a feeling and it will run through us in every single step we take to save our boy.
“Louie stepped down from the Neonatal Intensive Care Unit on the 30th December and went to the cardiac unit on Ward L51.
“During his time on the Neonatal ward, Louie fought every single day. On Christmas Eve, we decided to come home and try and have some normality with our girls. The decision to leave a critically ill baby or leave our girls without their parents on Christmas Eve was a heartbreaking choice to make. Even the girls weren’t as enthusiastic as normal. They all wanted to go to bed early and were upset that their new baby brother wasn’t there with them.
“We then got a phone call from the hospital at 9:30pm on Christmas Eve, saying our boy’s lung had collapsed. They told us he was stable, and so we had to make a choice. Leave the girls and go to Louie or stay at home making Christmas as normal as possible. We made the incredibly difficult choice to stay at home and then go back to the hospital on Christmas morning – again leaving our girls. This wasn’t normal but we accepted we were now on a path that was recreating the word ‘normal’ for us.
“CHSF has been there for me even when I didn’t know I needed them”
“On 2nd January Louie underwent his first open heart surgery to save his life yet again. Louie was to have a procedure to repair his hypoplastic aortic arch. This was the first of many surgeries our boy was going to be subject to. After his surgery, we were informed that his tricuspid valve was connected through the hole in his heart, meaning the hole could not be closed.
“This meant our boy could not be fixed later and that he would instead have to go through a series of palliative surgeries to prolong his life – which would only take him to his thirties.
“The day after his surgery, Louie crashed. His heart stopped beating and the amazing Carin Van Doorn opened his chest in the Paediatric Intensive Care Unit (PICU) and massaged his heart back to life. She then proceeded with an emergency surgery to fit PA bands to help the leakage in my boy’s heart.
“I’ll never forget the pain we felt that day. The unknown. I didn’t know anything about the heart. I thought it looked like when a child draws it. We just didn’t understand. As time went on, me and Louie’s dad became experts on Louie’s condition – advocating for him with every breath we took. In my heart, I knew I couldn’t save my boy. The least I could do was become knowledgeable enough to fight for him and his condition.
“Louie spent a few more weeks on the Paediatric Intensive Care Unit (PICU) before coming back to the cardiac ward. After just 48 hours he went into cardiac arrest and a crash call went out to save my boy yet again. Louie’s dad was out parking the car and for him to walk in to dozens of doctors around our boy was heart breaking. Off Louie went back to PICU where we were told he had chronic heart failure. There was nothing left they could do. No surgeries could save him – he was too small.
“He was fighting to stay alive through a ventilator and heart medications. They were out of options for Louie. My mum and brother came straight through. We didn’t want to say goodbye – we couldn’t. Louie was too strong; we could feel it. He was meant to be here, our boy. And that he did. He proved everyone wrong and continued to progress with medications.
Louie came home for the first time March but suffered acute deterioration. Louie’s sister Evie played a huge part in saving her brother’s life as the family rushed Louie to hospital.
“Louie needed a period of stability to grow to be ready for another surgery.
“On 5th March we finally got to bring our boy home for the first time. It was agreed he could have some respite time and get to know his family properly. Those couple of weeks were amazing, being able to say goodnight to all my babies under one roof. To fall asleep with our boy laid at the side of us in his crib. To just be home.
“But it was the most terrifying time knowing I hadn’t brought my baby home for good. We brought an incredibly sick child home, knowing he had to go back to do it all over again. Knowing that his heart could stop at any time…it was hard.
Setbacks and finding strength
“On 30th March my boy crashed again…we shared the following post on Facebook…
“So here we were again. Head of Family Support at CHSF, Sarah Cherry asked me what it was like being back on the ward. I told her it felt like we were home again with our hospital family here and all the weight had been lifted from my shoulders as I walked in. This time we knew what to expect, we knew what was coming – we didn’t know whether that was a good or bad thing.
“But he did it!! After Louie’s big surgery, pacemaker surgery and all the complications in-between we spent weeks in ICU until it was time to step down back to the cardiac ward. (Louie decided he wanted to go back to ICU for another week in between this as he does. He missed them so much!)
Coming home
“Jokes aside we did it, Louie did it, our girls did it. Six months of this journey. Six months of pain, fear and ferocious strength. On 28th May we got to bring our boy home…this time for good.
“Louie has some issues with aspiration due to vocal cord palsy when the nerve was damaged in surgery – he has no voice and needs to be NG fed. He has multiple meds a day but he’s here and he’s alive – nothing else matters.
“They say it takes a village to raise a child; well, it took a whole hospital to save mine! Every team, every person involved, I really hope you know the impact you’ve had on our family.
“CHSF has been there for me even when I didn’t know I needed them… to just take one look at me and say, ‘Come on we’re going for a walk, or a coffee!‘. You saved me more times than once. The immensely amazing work you do is remarkable. The equipment you provided to save Louie’s life. The time, the effort, the love you’ve shown. It doesn’t go unnoticed. I thank my lucky stars every day that I had you there for our team. Pamper packs, bravery cards for my girls, birthday cards…the list goes on. Days out paid for Nellie’s birthday; we thank you from the bottom of our hearts. We really couldn’t have done it without you.
“There’s been days through this I really didn’t think I could go on. Times I’ve broken down and been on the floor because I couldn’t bear the pain anymore. There was always someone in that hospital to not just save Louie, but to save me, to save our girls, to save his dad.
“I had a process. If it got heavy, I came away for a walk, had a cry and came back in strong again. I refused to cry at Louie’s bedside; I needed it to be surrounded by positive strong energy. We found a win in every day – even on the darkest days you look for the win, however big or small. If you look hard enough, there’ll always be one shining for you.
“Through all this, we were given a room at Eckersley House, parent accommodation across from the hospital – run by The Sick Children’s Trust and supported by CHSF. This meant we were only ever a phone call away. Every complication, every crash call every surgery – this amazing charity made it possible for us to be there.
“The charity organised camp beds to be put in our room so the girls could sleep over and we could try spend time as a family – this was possible because of you.
“No words can describe how grateful we are. When our little girl was sat saying all she wished for on her birthday candles was to see her brother…off we went for a late-night sleepover with Louie in Leeds. Birthdays should be spent as a family and that we did! The gorgeous staff at the LGI had a footprint card ready for Nellie too, from her baby brother
“This is just a glimpse of Louie’s story, but now it’s time for our family to heal. To heal with a special place for LGI and all it’s amazing staff in our hearts forever. With families we have met along the way staying in our lives. With nurses and doctors that we miss dearly yet are so grateful for, in our memories forever. Because this isn’t just a journey for our boy – it’s the family you make along the way that keeps you going, a family of support, tears, tantrums and love. That’s exactly what the LGI became for us.
“Tonight, we will light some fireworks. Fireworks we bought for New Year’s Eve that our girls didn’t want to light until Louie was home for good. A celebration of Louie’s life and our LGI family.”
After more than 30 years in congenital cardiac surgery and over a decade leading the team at the Leeds Congenital Heart Unit (LCHU), Carin van Doorn OBE will soon be retiring.
After dedicating her life to children’s cardiac care, we want to ensure that Carin’s legacy at Leeds lives on after she retires. You can help us do just that by donating to the ‘Because of Carin’ appeal.
“Hello, my name is Joseph, and I am a cardiac child.
“I was born with my heart condition and what has really helped me throughout my cardiac journey is music.
“At the age of five, I joined Wakefield Cathedral choir – most of the time just staring at the ceiling and wondering what was going on. But as I got older, I started to enjoy it and that’s when I started singing.
“At the age of six, I went on tour for a week with the choir. Most recently, we went to Norwich and I got to sing at The Cathedral of St. John the Baptist and Norwich Cathedral.
“At my school Christmas concert, I sang “We’re Walking in the Air” from The Snowman. Just before my voice dropped, I joined the Wakefield Cathedral Youth Choir where I sing alto.
“Because of choir, I’ve had the chance to sing in beautiful places, meet brilliant people and make lifelong friends – but I’m not just a fan of classical music. Along with Mozart and Beethoven, I enjoy singing indie rock and pop. Bands such as Lovejoy and artists like James Marriott.
“But as I am a cardiac child, I do spend a lot of time in hospital, and that means one thing – packing the old hospital bag. Usually I go for comfortable clothes, things I don’t mind getting dirty.
“Along with clothes, I will pack my headphones and a phone charger, just so I don’t have to listen to the constant beeping of the heart rate monitor across the hallway. I also pack a teddy bear. It may sound childish, but I think we all find comfort in a childhood companion – especially in a place like a hospital.
“Of course, if you forget anything at home, just ask your parent or guardian to fetch something for you.
“And that’s it from me! Enjoy the rest of your day! (That’s the end of that)
“Yours, Joseph”
Lucy, CHSF Family & Youth Support Worker said: “I have been supporting Joseph and his family for over a year.
“Everything from Lego building to working through his transition booklet, to making sure he could still have the Euro’s experience when his summer holiday got cancelled last year, due to him being in hospital with an infection.
“I have built a relationship with Joseph and his family to ensure they feel supported both in and out of hospital. Joseph came along to the Youth Day in August and is keen to be an ambassador for CHSF!”
Find out more about CHSF’s support for Teens and Young People over on our Youth Hub page
Autumn was diagnosed with a heart condition before she was born and needed surgery at just four months old at the Leeds Congenital Heart Unit.
Her mum Katelyn shares what the experience was like for their family – from diagnosis and hospital stays through to recovery.
“At my 20 week scan I found out that Autumn had an abnormal heart. At this stage we weren’t sure about her exact condition – how severe it was or anything! “We then had many tests, blood tests and scans we eventually got a diagnosis of Tetralogy of fallot (ToF). I remember just bursting into tears in the room. “Throughout the rest of the pregnancy, we learnt more about Autumn’s heart condition and we were told she would have to have open heart surgery at the LGI. Before I knew it my heart just sank into the unknown. “When Autumn was born it was very overwhelming. I met the cardiologist and a few more people. Her ‘blue episodes’ started when she was about two months old and I’ve never been so scared in my life. Since the first blue episode, every single night I couldn’t sleep – I was always checking on her. Sometimes staying awake until 3am before I knew I could sleep.
Autumn’s heart defect was detected at the 20-week scan and was later diagnosed as Tetralogy of fallot (ToF). She would need open heart surgery at Leeds to save her life.
“Autumn had about 4 ‘blue episodes’ then soon it came to surgery day…which got cancelled. To be honest I didn’t know how to feel. “When we got a new surgery date, it came quicker than I expected. It felt as though I blinked and she was being taken down for surgery. That was longest day of our lives, it really was… “I hated the thought of my baby girl being on an operating bed and me not even being in the room next to her! That day we walked 14 miles – just to kill time and try to distract our minds! “We then eventually got the phone call and I was dreading to answer because I didn’t know whether it would be good news or bad news…and it was good news! We could see Autumn in half an hour in PICU – so of course we immediately stopped what we were doing and headed over to the hospital. “The first time seeing Autumn with her tubes and drains was upsetting, but for me it was when she first opened her eyes. That will be a look I never will forget because she looked so scared and petrified.
“We were only in PICU for a day and a half! “Autumn came of the ventilator just four hours after surgery and she was breathing on her own. She did then need a little bit of support and was given some oxygen, but she soon came off that too. She also went straight onto bottles as she ripped out her feeding tube twice! And she did so well with feeding on bottles again. “Then we headed over to Ward L51. We were on the children’s heart ward for a few days and it was here that we also met a lovely family who made a worrying time a little bit more bearable and happier! Before we knew it, it was time for Autumn to be discharged. “Since coming home Autumn’s is doing really well and her recovery is progressing. “Honestly, we are all so proud of her considering she is only 5 months old and was only 4 months old when she had the surgery. She really has done amazingly. What a little warrior she is! “I just want to thank everyone who was in involved with Autumn in the hospital, especially the nurses on L51 and in PICU! “I want to thank Children’s Heart Surgery Fund as they brought me some things to keep my mind occupied on the night of Autumn having her pre-op stuff done. We had a room to stay in while she was in PICU and they were also kind enough to give us a Tesco voucher to help with the expenses of buying food while we were in hospital. Thank you also for giving Autumn a Katie Bear and a certificate – this will always be a powerful memory for Autumn showing just how well she did, and just how much of a fighter and warrior she is! “Autumn is now doing really well and is loving being back at home with her sister Grace. We are forever proud of our Autumn.”CHSF exists to support local heart warriors and their families. Empowered lives, because of you. There is no better way to explain our charity than using a powerful story – like yours.
We can only keep being there for our life-saving heart unit, patients and families with your help. Make a donation today to help us continue our vital work.
Louie’s journey through complex heart surgery has been nothing short of extraordinary.
In this blog, Louie’s mum Emily shares the story of their time in hospital, the incredible care they received and the strength their family found through the toughest of times.
“On 8th April we woke up knowing that our boy was critically ill…we knew his heart was failing and we knew from the very beginning our Louie couldn’t be fixed and was undergoing a series of palliative surgeries to simply prolong his life.
“That day the lead cardiac surgeon sat us down and told us she wanted to do the impossible and try and save my boy. She wanted to take a chance on Louie – to give him a chance at life.
“Carin van Doorn had watched Louie’s progress and studied him since birth. She had already saved him twice with two heart surgeries performed with Mr Ali Al-Surraf (a magnificent heart surgeon whose presence alone has always made me smile from day one) .He always said he would find a way for Louie. They now had a plan to go in for a full repair with an 80% survival rate.
“I lay my precious boy on the operating table yet again knowing his heart needed to stop beating on bypass…putting his life in this incredible team’s hands with only hope and prayers it would beat again.
“14 painfully long hours later, on 9th April our boy’s surgery was complete. An extremely complex cardiac repair and they did the impossible. They changed history that day with my boy and gave him the greatest gift of all…life.
“Transposition of the great arteries, hypoplastic aortic arch, straddling tricuspid valve and a complex VSD sat between the bottom and top ventricle. Multiple other VSDs. HLHS. He now has near enough a full repair. He may need some tweaks in future with a leaky valve, but we’ll tackle that when/if the time comes. For now, he’s in the safest position he’s ever been in.
“Post surgery my Louie needed a further open heart surgery to fit a permanent pacemaker to support his heart. This was fitted by the lovely surgeon Mr Giuseppe Pelella, yet again another amazing human who has been involved from day dot.
Louie spent his first 6 months in hospital, being cared for by the Leeds Congenital Heart Unit team and Children’s Heart Surgery Fund
“They say it takes a village to raise a child; well, it took a whole hospital to save mine!”
“Afterwards my Louie had it rough. He has suffered two bleeds on his brain and possible sight impairment secondary to the area of the bleed. He had a chylothorax, pneumothorax, a blood clot in his jugular, infections, NEC, brain damage…the list goes on. But Louie being Louie is defying all odds yet again, showing substantial improvements daily! Because that’s what we do, it’s who we are, who we’ve made ourselves be – we dig deep and pull strength back every single moment of this journey.
“After 24 days in intensive care with multiple severe complications he was back on the cardiac ward being the incredible, strong, little soul he’s always been. There is one thing I know for sure – there is nothing my boy can’t do; there is nothing these surgeons can’t do! Louie’s team – his cardiologist Dr Bissell has never given up on him from the very beginning, his nurses and the love they show, they all are the greatest superheroes. Far too many incredible souls to mention in that building who all love and care for Louie dearly. Always rooting for our boy, and we’re always rooting for you!
“We will never be able to repay Carin van Doorn for taking that chance on our boy, for believing in him and for changing our lives forever. For believing in herself and having confidence in the process. For giving him the chance at life he deserves, the surgery he always deserved and fought so hard for.
“A nurse said to me ‘I never really believed in God… but if there is one it’s Carin van Doorn’. The woman that saved our baby boy. That quote will sit with me whole heartedly forever. So, here’s to your road of recovery little Louie – to a long, happy and meaningful life!
Louie was born via emergency caesarean section in Rotherham and his care was transferred straight to the specialist heart centre in Leeds
The early days
“But this isn’t where our story started or ended. Louie had been an inpatient since he was born waiting for this day. With just two weeks respite at home in between to spend time with his family.
“Tuesday 17th December our beautiful boy arrived earthside, from an extremely complicated labour into a cat 1 emergency section. Our boy was born needing significant heart surgery, fighting for his life. He was rushed straight to Leeds under the paediatric cardiology teams where he fought every second of every day, blowing us all away. Me and baby were both fighting sepsis on top of my boy’s heart and kidney defects.
“Leeds General Infirmary transferred my care straight to them from theatre in Rotherham via ambulance to keep us together. Louie travelled with his dad through Embrace and I went in my own ambulance.
“Our precious fighter went through his first heart operation within hours of being born and he came out of the other side like a warrior. He was looking at several bigger open heart surgeries in the coming weeks to save his life, which we had no doubts at all he would pull through. In the meantime, the ventilators and all the machinery were doing an incredible job.
“We cannot put into words how much we appreciate every single one of his surgeons, doctors and nurses – they loved him as much as we did, right from the beginning. Louie is made of the purest, strongest of souls and we knew then he would fight through anything they threw at him, and nobody could tell us any different. We were behind him every step of the way, my perfect child – sent from our angels in heaven. We didn’t get this far to give up now. We prayed and prayed for our boy to pull through posting on socials: ‘Me, Andy & our girls stand with open arms hanging onto all the love and prayers being sent our way. We need every single one of them‘.
“How Louie’s dad coped going from me in 1:1 high intensity care, to our boy in intensive care on the neonatal ward, giving us both all the love we needed is beyond words of courage and love – he’s the most incredible father to our little boy already.
Life in hospital
“Little did we know this was the start of a 5 month journey in hospital – of sorrow and strength. 5 months of my family being broken, living apart and isolated. My biggest two girls, Tilly (11) and Evie (12) went to live with their dad and his partner. My little Nellie (6) went to live with her dad, Nannan and grandad. We thought it was just a short-term fix. It is so admirable how all three of my girls have drawn the strength to power through all this and be understanding enough to know Louie needed us living in Leeds.
“I’ve never felt pride for any of my kids like this. Meeting their brother for the first time should have been a magical moment. Instead, he was laid down, fighting to be alive. My girls told me they had to be brave and come see him, as they wanted to make sure they had met him. They are words so humble and strong, that no parent should hear.
“We soon came to the conclusion my Louie was writing his own story. This wasn’t a straight motorway trip. This was a journey of windy roads and curves. Stopping off for a rest on the way at every stop he could make – and scaring his mum and dad to their core!
“You make a decision. A decision of hope. A decision to make hope a choice, and once you have made that choice, hope then becomes a feeling and it will run through us in every single step we take to save our boy.
“Louie stepped down from the Neonatal Intensive Care Unit on the 30th December and went to the cardiac unit on Ward L51.
“During his time on the Neonatal ward, Louie fought every single day. On Christmas Eve, we decided to come home and try and have some normality with our girls. The decision to leave a critically ill baby or leave our girls without their parents on Christmas Eve was a heartbreaking choice to make. Even the girls weren’t as enthusiastic as normal. They all wanted to go to bed early and were upset that their new baby brother wasn’t there with them.
“We then got a phone call from the hospital at 9:30pm on Christmas Eve, saying our boy’s lung had collapsed. They told us he was stable, and so we had to make a choice. Leave the girls and go to Louie or stay at home making Christmas as normal as possible. We made the incredibly difficult choice to stay at home and then go back to the hospital on Christmas morning – again leaving our girls. This wasn’t normal but we accepted we were now on a path that was recreating the word ‘normal’ for us.
“CHSF has been there for me even when I didn’t know I needed them”
“On 2nd January Louie underwent his first open heart surgery to save his life yet again. Louie was to have a procedure to repair his hypoplastic aortic arch. This was the first of many surgeries our boy was going to be subject to. After his surgery, we were informed that his tricuspid valve was connected through the hole in his heart, meaning the hole could not be closed.
“This meant our boy could not be fixed later and that he would instead have to go through a series of palliative surgeries to prolong his life – which would only take him to his thirties.
“The day after his surgery, Louie crashed. His heart stopped beating and the amazing Carin Van Doorn opened his chest in the Paediatric Intensive Care Unit (PICU) and massaged his heart back to life. She then proceeded with an emergency surgery to fit PA bands to help the leakage in my boy’s heart.
“I’ll never forget the pain we felt that day. The unknown. I didn’t know anything about the heart. I thought it looked like when a child draws it. We just didn’t understand. As time went on, me and Louie’s dad became experts on Louie’s condition – advocating for him with every breath we took. In my heart, I knew I couldn’t save my boy. The least I could do was become knowledgeable enough to fight for him and his condition.
“Louie spent a few more weeks on the Paediatric Intensive Care Unit (PICU) before coming back to the cardiac ward. After just 48 hours he went into cardiac arrest and a crash call went out to save my boy yet again. Louie’s dad was out parking the car and for him to walk in to dozens of doctors around our boy was heart breaking. Off Louie went back to PICU where we were told he had chronic heart failure. There was nothing left they could do. No surgeries could save him – he was too small.
“He was fighting to stay alive through a ventilator and heart medications. They were out of options for Louie. My mum and brother came straight through. We didn’t want to say goodbye – we couldn’t. Louie was too strong; we could feel it. He was meant to be here, our boy. And that he did. He proved everyone wrong and continued to progress with medications.
Louie came home for the first time March but suffered acute deterioration. Louie’s sister Evie played a huge part in saving her brother’s life as the family rushed Louie to hospital.
“Louie needed a period of stability to grow to be ready for another surgery.
“On 5th March we finally got to bring our boy home for the first time. It was agreed he could have some respite time and get to know his family properly. Those couple of weeks were amazing, being able to say goodnight to all my babies under one roof. To fall asleep with our boy laid at the side of us in his crib. To just be home.
“But it was the most terrifying time knowing I hadn’t brought my baby home for good. We brought an incredibly sick child home, knowing he had to go back to do it all over again. Knowing that his heart could stop at any time…it was hard.
Setbacks and finding strength
“On 30th March my boy crashed again…we shared the following post on Facebook…
“So here we were again. Head of Family Support at CHSF, Sarah Cherry asked me what it was like being back on the ward. I told her it felt like we were home again with our hospital family here and all the weight had been lifted from my shoulders as I walked in. This time we knew what to expect, we knew what was coming – we didn’t know whether that was a good or bad thing.
“But he did it!! After Louie’s big surgery, pacemaker surgery and all the complications in-between we spent weeks in ICU until it was time to step down back to the cardiac ward. (Louie decided he wanted to go back to ICU for another week in between this as he does. He missed them so much!)
Coming home
“Jokes aside we did it, Louie did it, our girls did it. Six months of this journey. Six months of pain, fear and ferocious strength. On 28th May we got to bring our boy home…this time for good.
“Louie has some issues with aspiration due to vocal cord palsy when the nerve was damaged in surgery – he has no voice and needs to be NG fed. He has multiple meds a day but he’s here and he’s alive – nothing else matters.
“They say it takes a village to raise a child; well, it took a whole hospital to save mine! Every team, every person involved, I really hope you know the impact you’ve had on our family.
“CHSF has been there for me even when I didn’t know I needed them… to just take one look at me and say, ‘Come on we’re going for a walk, or a coffee!‘. You saved me more times than once. The immensely amazing work you do is remarkable. The equipment you provided to save Louie’s life. The time, the effort, the love you’ve shown. It doesn’t go unnoticed. I thank my lucky stars every day that I had you there for our team. Pamper packs, bravery cards for my girls, birthday cards…the list goes on. Days out paid for Nellie’s birthday; we thank you from the bottom of our hearts. We really couldn’t have done it without you.
“There’s been days through this I really didn’t think I could go on. Times I’ve broken down and been on the floor because I couldn’t bear the pain anymore. There was always someone in that hospital to not just save Louie, but to save me, to save our girls, to save his dad.
“I had a process. If it got heavy, I came away for a walk, had a cry and came back in strong again. I refused to cry at Louie’s bedside; I needed it to be surrounded by positive strong energy. We found a win in every day – even on the darkest days you look for the win, however big or small. If you look hard enough, there’ll always be one shining for you.
“Through all this, we were given a room at Eckersley House, parent accommodation across from the hospital – run by The Sick Children’s Trust and supported by CHSF. This meant we were only ever a phone call away. Every complication, every crash call every surgery – this amazing charity made it possible for us to be there.
“The charity organised camp beds to be put in our room so the girls could sleep over and we could try spend time as a family – this was possible because of you.
“No words can describe how grateful we are. When our little girl was sat saying all she wished for on her birthday candles was to see her brother…off we went for a late-night sleepover with Louie in Leeds. Birthdays should be spent as a family and that we did! The gorgeous staff at the LGI had a footprint card ready for Nellie too, from her baby brother
“This is just a glimpse of Louie’s story, but now it’s time for our family to heal. To heal with a special place for LGI and all it’s amazing staff in our hearts forever. With families we have met along the way staying in our lives. With nurses and doctors that we miss dearly yet are so grateful for, in our memories forever. Because this isn’t just a journey for our boy – it’s the family you make along the way that keeps you going, a family of support, tears, tantrums and love. That’s exactly what the LGI became for us.
“Tonight, we will light some fireworks. Fireworks we bought for New Year’s Eve that our girls didn’t want to light until Louie was home for good. A celebration of Louie’s life and our LGI family.”
CHSF exists to support local heart warriors and their families. Empowered lives, because of you. There is no better way to explain our charity than using a powerful story – like yours.
We can only keep being there for our life-saving heart unit, patients and families with your help. Make a donation today to help us continue our vital work.