Florence’s journey into the world of congenital heart disease began long before her family were ready for it.
What followed was a difficult mix of fear, medical decisions and tiny moments of hope that carried them through.
Mum Kelly, from Halifax, said:
“Florence’s journey began before we were ready. Hearing the words ‘congenital heart defect’ changes everything in a second. What were already challenging days became a nightmare filled with monitors, oxygen levels, medical language and decisions no parent ever imagines making. There were moments of fear and desperation that took our breath away. Watching our beautiful, small but mighty warrior fight. There was hope – we prayed and held on to hope from the beginning.
“From diagnosis through treatment, it has been a world of hospital corridors, specialists, waiting rooms and holding her tiny hand while she faced things far bigger than her. But it has also been a journey of resilience. Florence is stronger than we ever knew a human could be. She has taught us what courage really looks like.
“Children’s Heart Surgery Fund made us feel less alone. In a world that can feel isolating and overwhelming, they provided practical support, reassurance and a sense of community. We were part of a club no parent wants to be a part of, but their presence, compassion, kindness and thoughtfulness kept us going.
“Knowing there were people who understood the unique fear and strength of heart families made an enormous difference. They didn’t just support Florence, they supported us as parents who were trying to stay standing through it all.
Why should people support CHSF this Heart Month / Wear Red Day?
“I think it is so important that people support CHSF this Heart Month because behind every statistic is a child like Florence. A tiny chest with a fierce, determined heart.
“Supporting CHSF means supporting families like us at the worst time of our lives, in crisis, and reminding heart warriors that they are seen.
“Wearing red isn’t just symbolic it’s solidarity. It’s saying these children matter. Their fight matters. CHSF are an amazing charity that makes a REAL difference, and we are forever grateful to be part of this club.
“To other heart families: you are not alone. The fear, the exhaustion, the guilt, the love that feels almost unbearable, it’s all part of this journey. You are stronger than you think. Your child is stronger than you know. Take it one hour at a time, even minute by minute. Hold their hand. Let others hold yours when you need it the most. Reach out and keep talking. There is hope even in the hardest days.”
Wear red in Feb for the thousands of children in our region like Florence Dottie!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Donate online to our Wear Red Day 2026 JustGiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085(e.g. To give £5 text: CHSFWRD 5 to 70085)
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
“The time in hospital was a very scary time and the resources that CHSF provide are invaluable.
“CHSF is an amazing resource for children with congenital heart disease and their families!”
Mum Sarah, from Grimsby, said:
“Our local hospital discovered Rowan had a Ventricular septal defect (VSD) at birth before we went home, but we were told it would likely close on its own.
“He was then diagnosed with a condition called Pyloric stenosis, and at nine weeks old was rushed to Sheffield Children’s – needing surgery on his stomach. Before the operation could happen, the anaesthetist needed to review his heart echo (echocardiogram), however our local hospital seemed to have lost the images/report.
“Sheffield decided it would be quicker to carry out their own echo. In doing so, they found that Rowan’s VSD was more complex than was originally discovered, meaning we had to wait for a paediatric cardiologist to come over from Leeds Congenital Heart Unit as that was our local specialist heart centre.
“The Cardiologist that came from Leeds was brilliant. We were unsure as to whether he would have to be transferred to the Leeds Congenital Heart Unit for cardiac surgery, as well as the surgery on his stomach, but after speaking with the cardiologist, we were reassured that it was safe for Rowan to have his surgery in Sheffield, and he did not need immediate surgery on his heart.
“From this point on, Leeds kept a close eye on Rowan’s condition – making sure he was always seen in the joint clinics when they visited our local hospital. For years his condition did not change, however when he was about six, they discovered a change and this then meant he needed surgery to repair the hole in his heart.
“This was done in September 2025, when Rowan was seven years old. The Leeds Congenital Heart Unit was absolutely brilliant from start to finish. The children’s heart ward (Ward L51) was amazing, and the support from CHSF made the whole experience so much easier to handle as parents of a heart warrior.
“The time in hospital was a very scary time and the resources that CHSF provide are invaluable. Parent accommodation was the most important, so we had somewhere to sleep whilst Rowan was in PICU and HDU.
“Getting a Katie Bear teddy, medal and certificate afterwards was something Rowan really cherished and is very proud of.
“Feeling part of a community after the surgery as well is something that I’m grateful for and never expected.
“Rowan still has a leak in his tricuspid valve, and may need more surgery in the future, but hopefully it will be many years before he does. We are forever grateful to Leeds for making sure Rowan was given the correct care!
“CHSF is an amazing resource for children with congenital heart disease and their families!”
Wear red in Feb for the thousands of children in our region like Rowan!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Donate online to our Wear Red Day 2026 JustGiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085(e.g. To give £5 text: CHSFWRD 5 to 70085)
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
“I realised there is a whole community of heart warriors and incredibly strong parents who truly understand this journey.
“There will be hard days. There will be moments of fear and exhaustion. But there will also be strength you never knew you had, love that carries you through and people who step in to support you when you need it most.”
Mum Shakeelah said:
“When I found out about my son’s diagnosis antenatally, I really struggled to come to terms with it. I had never heard of congenital heart disease (CHD) before. During my appointments, I never saw any other families going through the same thing, which made me feel like this must be very rare. I felt alone.
“As a diabetic, I blamed myself. I kept thinking this was my fault and that I had somehow caused my baby’s heart condition. I didn’t know any other families affected by CHD, so I had no one to relate to or share my fears with.
“I was in close contact with CCNS Marie Wray, who answered all my questions and was incredibly supportive during such an overwhelming time. When I was waiting for a NICU bed to become available, I met another family whose child also had CHD. For the first time, I felt like I had someone who truly understood my anxieties and fears.
“After delivering my son, he was taken straight to NICU. When he was later transferred to HDU, someone from CHSF left a bag of essentials for me, even though I wasn’t present at the time. That small act of kindness meant so much.
“I also met Sarah (Head of Family Support) on several occasions. From the moment we spoke, I felt like I had known her for years. She immediately put me at ease and supported me through such a difficult period. Having that emotional support made an incredible difference to our journey.
“CHSF supported us financially during an incredibly stressful time. They provided money for fuel and Tesco vouchers, which made a huge difference when we were travelling back and forth to the hospital and managing everyday costs alongside everything else.
“There were moments when I felt completely emotionally drained and overwhelmed. At one point, I had run out of basic toiletries. I reached out to Sarah, and she brought some in for me and discreetly handed them over. That small, thoughtful gesture meant more than I can explain. It wasn’t just practical support – it made me feel cared for, understood, and not alone.
“I think people should support Wear Red Day to raise awareness of how many babies are affected by congenital heart disease every single day. Before my son’s diagnosis, I had never even heard of CHD. The more awareness there is, the more families will understand that they are not alone.
“Greater awareness also helps ensure that our children are treated equally and with understanding. Children with CHD should not be labelled or defined by their condition. They are strong, brave heart warriors who deserve the same opportunities, compassion, and inclusion as any other child.
“By supporting Wear Red Day, people are not just wearing a colour – they are standing with families like ours, helping to spread knowledge, reduce stigma, and show that every heart matters.
“To other CHD families – you are not alone, even when it feels like you are.
“I realised there is a whole community of heart warriors and incredibly strong parents who truly understand this journey. There will be hard days. There will be moments of fear and exhaustion. But there will also be strength you never knew you had, love that carries you through and people who step in to support you when you need it most.
“Be gentle with yourself. Ask questions. Reach out for help. Accept support when it’s offered. You are doing the very best you can for your child.
“Our children are stronger than we ever imagined – and so are we. Sending love and strength to every heart warrior and their family.”
Wear red in Feb for the thousands of children in our region like Abdul Mu’eed!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Donate online to our Wear Red Day 2026 JustGiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085(e.g. To give £5 text: CHSFWRD 5 to 70085)
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
“Everyone was absolutely incredible supporting us through every hurdle – there certainly were a lot!
“There is no way we would’ve gotten through it without the Children’s Heart Surgery Fund team.”
Mum Katie, from Bridlington, said:
“When Vincent was 9 days old, we were admitted to Scarborough hospital as he was extremely jaundiced.
“Upon doing his admission the nurses discovered his oxygen levels sat around 60-70.
“Within minutes the room was flooded with doctors trying to figure out why.
“He had a heart scan within the hour, and the doctors told us the left side of his heart was small and that blood wasn’t being pumped around his body properly.
“We were then transferred into the special baby unit and sent to Leeds that night, arriving around 3am.
“By 7am we were taken aside and they told us that Vincent had obstructed TAPVD and a hole in the centre of his heart. The lack of oxygen to his liver was causing his jaundice, and they had to operate urgently.
“On the lead up to his surgery they explained that they would need two specialist heart surgeons as Vincent’s case was quite difficult. They’d need to place him on bypass and actually take his heart out of his chest and flip it over to perform the surgery.
“As soon as we saw Vincent after surgery was complete, he was like a brand new baby – oxygen levels at 99, no longer yellow and purple and seemed to be doing incredibly.
“We did have a few complications. He began having apnoea’s, seizures and SVTs which were only resolved with medication. Due to this they did an urgent scan and found some damage to his brain.
“Everyone was absolutely incredible supporting us through every hurdle – there certainly were a lot!
“There is no way we would’ve gotten through it without the Children’s Heart Surgery Fund team. Anything we needed they did their absolute best to help, even if it was just a chat.
“Fast forward to now you would never ever know what this boy has been through. He is the happiest and most incredible boy. Hitting all of his milestones and proving nothing can knock him down!
“We will forever be grateful for every single person who helped us on Vincent’s heart journey.”
Wear red in Feb for the thousands of children in our region like Vincent!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Donate online to our Wear Red Day 2026 JustGiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085(e.g. To give £5 text: CHSFWRD 5 to 70085)
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
From a prenatal diagnosis to multiple life-saving surgeries, this blog shares Sienna’s incredible journey with Hypoplastic right heart syndrome (HRHS) and the care that carried her through.
It also highlights the vital support her family received from Children’s Heart Surgery Fund every step of the way.
Mum Becky, from Sheffield, said:
“We came into this journey when I was around 23 weeks pregnant, when our local hospital found that Sienna’s right side of her heart hadn’t developed properly. She was diagnosed with Hypoplastic right heart syndrome (HRHS).
“We were referred to Fetal Medicine at Leeds, nervous for the journey ahead.
“I delivered Sienna in Leeds which was scary as we’re from Sheffield – I was induced and she was born naturally with a great labour.
“At birth, and after a quick cuddle, Sienna was taken to the neonatal unit. Sienna did extremely well and didn’t require any oxygen when she was born.
“She was fitted a NG tube to support her feeding and was given Prostin.
An NG tube is a small tube that is passed up your baby’s nose and down into the stomach. The tube is used to give milk and or medicine when a baby is unable to take everything they need orally.
‘Prostin’ (alprostadil) is a medication used in neonates with certain congenital heart defects to maintain the patency of the ductus arteriosus, which is often administered via continuous intravenous infusion.
The Glenn procedure“Sienna then had a BT shunt fitted a few weeks in. The shunt is a small tube put in that delivers blood flow to the lungs. She needed a trip to PICU as Sienna doesn’t do anything easy! This allowed her body to rest and then she then stabilised as she had time to get used to her new circulation.
“A couple of weeks staying on the ward to put weight on and then Sienna came home.
“At seven months old Sienna had her Glenn surgery. After this we had visits to the Cardiac High-Risk Clinic every two weeks. She was discharged on 24th October last year. We now have six-monthly follow ups until Sienna is ready for her Fontan.
directly connects a major vein (superior vena cava) and a child’s pulmonary artery. This lets oxygen-poor blood from the upper body go straight to the lungs to get oxygen – usually done when a baby is a few months old.
The Fontan procedure connects another major vein (inferior vena cava) and the pulmonary artery. This lets oxygen-poor blood from the lower body get oxygen directly from the lungs – usually done between ages three and six.
“These guys are amazing! From our first stay in Leeds, Children’s Heart Surgery Fund were always around – a friendly face and chat. They helped us financially with grants whilst Sienna was in hospital and my partner was off work, as well as giving us a Family accommodation room to stay in. Resources in the parents’ room on the ward were also funded by CHSF.
“Now Sienna is home events like Wear Red Day at nursery and the annual Superhero Walk give her a sense of belonging and raise awareness of her heart condition.”
Wear red in Feb for the thousands of children in our region like Sienna!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Donate online to our Wear Red Day 2026 JustGiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085(e.g. To give £5 text: CHSFWRD 5 to 70085)
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
You not only raised significant donations for CHSF in and around February for Heart Month, but with your help we communicated our cause loud and clear to every corner of the region through your stories!
Here’s a round-up of just some of the blogs and local news which helped raise awareness and donations in the past few weeks…
Finleywas the face of the Wear Red Day fundraising pack this year. Mum Tamra describes how he was rushed straight to Scarborough’s Special Care Baby Unit with a suspected infection at birth, and then immediately blue-lighted to the Leeds Congenital Heart Unit (LCHU).
Read the full story here.
Alessia Mae is fast approaching her first birthday, but at birth she was sent urgently to her local hospital as she was critically low on oxygen and had open heart surgery at just a day old in Leeds.
This was reported in the Bradford Telegraph and Argus and on our blog here.
Three-year old Zak’s condition was found by complete coincidence as reported in The York Press, but they found forever friends in CHSF and Katie Bear during his treatment.
Mum Olivia explains on our blog here.
And 17-year old Alfie’s family found out he had congenital heart disease (CHD) when he was just 2 months old. Following multiple procedures, Alfie is now enjoying life both as a teenager and keen LUFC supporter.
Mum Kirsty tells us on our blog here.
When
Lucawas born, mum Emma and dad Michael discovered he had a very loud heart murmur. The day after, they were transferred from Jimmy’s to the Leeds Children’s Hospital for a heart scan. It was then when they received the congenital heart disease (CHD) diagnosis.
Read more here.
Bradford-based adult patient Louise had open heart surgery aged 7 at Killingbeck Hospital. Now 41, Louise celebrated her 40th year by completing an enviable set of running fundraisers for CHSF in 2024!
Read all about it on our blog here.
And CHSF supporter Grant – dad to heart hero Joseph – is taking part in our 15,000ft Skydive to thank “all the people who played a part in saving my son’s life”.
Find out more here.
We also had numerous other local press stories because of you, including the following families…
- 3-month old Hadi from Halifax had open heart surgery at just one-month old. Read more in the Halifax Courier…
- 8-year old Maisy from Hull is now ‘living life to the fullest’. Read more in Hull Live…
- Six-month old George’s story from Leeds was diagnosed at just 26 days old. Read more on Leeds Live…
- Six-year old Olive from Grimsby was diagnosed with CHD following a heart murmur when she was two. Read more in the Grimsby Telegraph…
- Three-year old Teddy from Rotherham is due his third open heart surgery later this year. Read more in the Rotherham Advertiser…
- Five-year old Abraham, also from Rotherham, has already had three open heart surgeries and celebrated Wear Red Day at his school. Read more in the Rotherham Advertiser…
- Knox is living the life to the full, taking part in taekwondo three times per week! Read more in the Barnsley Chronicle…
- And last but not least, 10-month old Jackson from Doncaster has inspired his grandad’s epic fundraiser. Read more in the Doncaster Free Press…
We can’t thank you all enough for helping us reach local audiences and spreading our message!
You can still make a donation for Wear Red Day and Heart Month!
Your donation will do so much for our region’s life-saving heart unit, it’s patients and their families.
Got fundraising to pay in? Go to chsf.org.uk/wear-red-day/#payingin to see ways you can get your money to us!
Thank you again – you’re all inc-RED-ible!
When Luca was born, mum Emma and dad Michael discovered Luca had a very loud heart murmur.
The day after, they were transferred from Jimmy’s to the Leeds Children’s Hospital for a heart scan. It was then when they received the congenital heart disease (CHD) diagnosis of Tetralogy of Fallot.
Emma, from Leeds, picks up the story:
“During the scariest, most worrying times of our lives, we received amazing treatment from everyone at Leeds Children Hospital. The people we met during our time in the hospital were lovely and really made lasting impressions with us and our family.
“When we were first on the ward when Luca was just 3 days old, Sarah (CHSF Family Support worker) came to visit us, to introduce herself and explain how she and the charity could support us. She also brought with her a care package with some essentials that were greatly received. They also fund the accommodation we stayed in while Luca was recovering after his surgery when was 1 year old, which meant we could be at his bedside within minutes.
“CHSF also came to present Luca with his very own Katie Bear (CHSF mascot teddy) and medal after his surgery.
“Ever since Luca was diagnosed, it’s been really important to us as a family to help raise awareness for CHD and Wear Red Day is a perfect opportunity do this! Whenever we share Luca’s story with someone, we often hear of how they or someone they know have been affected by CHD, it’s so much more common than we ever realised. I wish we knew then, what we know today.
“Over the last 2 years we’ve held a bake sale for Wear Red Day 2023, got a local café involved for Wear Red Day 2024, where we decorated the whole place and encouraged them to wear red.
“They also sold red coloured treats on the day and had collection boxes on tables.
“Michael has run the Great North Run (GNR) for CHSF and we have other family members and friends running the Brighton Marathon and GNR this year for CHSF too!
“Luca is very well and is a typical 2-year-old toddler! He’s a very chatty, bubbly personality and loves to sing and dance.
“He will require further surgery in future and until then we’ll continue to be monitored at Leeds and have annual heart scans.”
Wear red in Feb for the thousands of children in our region like Luca!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Donate online to our Wear Red Day 2025 Justgiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085(e.g. To give £5 text: CHSFWRD 5 to 70085)
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
17-year old Alfie’s family found out he had congenital heart disease (CHD) when he was just 2 months old.
Following multiple procedures, Alfie is now enjoying life both as a teenager and keen LUFC supporter, as mum Kirsty tells us:
“Alfie was only 7 weeks old when we found out he had congenital heart disease. He was diagnosed with aortic stenosis and mitral valve regeneration and at 8 weeks he had a ballooning done of his aortic valve to help widen it.
“Alfie got sick again at 10 months old and was admitted to LGI once more. Again it was decided then that the surgeons would replace his mitral valve for a mechanical one, and he was put on Warfarin to help thin his blood so it could pass through the valve and round the heart.
“His next operation happened at age 5 as the mechanical valve had outgrown him. Then when he was 14 he went for open heart surgery again, but this time he had his aortic and mitral valves replaced and an aortic arch repair.
Alfie is now 17
“After this surgery, Alfie became ill. He had got endocarditis and this required a 6 week stay for IV antibiotics. This was hard to take in at first, but eventually it did and this again was explained well and we were talked through every test and treatment option.
“When Alfie was first admitted we were given a lovely family room by CHSF which was helpful as we weren’t far from him. The most recent time he was admitted, we were also offered a room, but we wanted another family to have this as we do not live far. We were also given a welcome pack with essentials in.
“I also had travel expenses paid weekly to help with journeys to and from the hospital as I needed a break once a week, plus I had to catch up on washing. They also provided Alfie with a takeaway voucher so he could have movie night once a week. He is autistic and found it hard to adapt and his stay very hard.
“CHSF helped us with an INR home testing machine to save us having to visit hospital for blood tests (which would have been up to 3 times a week) which Alfie hated. This had a big impact on home life and made it much more normal.
“CHSF also donated a Leeds United ticket to Alfie, where he had a meal and watched the match – he absolutely loves his team. This was so thoughtful and Alfie enjoyed every moment. Alfie and his dad raised £500 back in lockdown for CHSF as we wanted to give something back. As a family we can’t thank the charity enough!
Wear red in Feb for the thousands of children in our region like Alfie!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Unable to do your own Wear Red event this month?
Donate online to our Wear Red Day 2025 Justgiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085(e.g. To give £5 text: CHSFWRD 5 to 70085)
[Texts cost the chosen donation amount plus one standard network rate message]
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
We know it’s vitally important to share your journeys with congenital heart disease. Your experiences are both reassuring and educational for other heart families, and provide vital awareness for others.
3-year old Zak’s condition was found by complete coincidence, but they found forever friends in CHSF and Katie Bear during his treatment, as mum Olivia explains:
“When Zak was 15 months old, he had an infected finger. We went backwards and forwards to the GP trialling multiple antibiotics with no luck until eventually he was reluctantly referred to York Hospital’s paediatric department.
“When we got there the usual observations were taken and the nurse turned to us and said ‘Oh I can hear, he has a heart murmur doesn’t he?’ which took us by surprise and we responded with ‘Not that we know of!’
“Fast forward a week and of course the murmur was still there, so we were referred for an echo and 4 months later in June 2023, we headed to York hospital for the appointment that would turn our world upside down.
Zak on Ward L51 with his Katie Bear
“The ultrasound tech said that Zak had a large Ventricular Septal Defect (VSD) and a leaking valve, however the specialist wasn’t going to be in the hospital for us to speak to until the end of July 2023.
“We nervously awaited this appointment and were told that Zak would need to have open heart surgery in the next 6-12 months to close the VSD. Fast forward to 3rd January 2024 and we were on our way to Leeds hospital ahead of the surgery the following morning.
“I remember the day Zak had his surgery like it was yesterday. I remember waiting around for what felt like a lifetime waiting to hear that he was out of surgery and rushing straight to Paediatric Intensive Care (PICU) as soon as we heard.
“Seeing my little boy with so many wires, tubes and drains coming out of him whilst completely unconscious is an image that will never leave my mind.
“At first there were some complications, the first night Zak spent in PICU he actually ended up with a collapsed lung which was so incredibly scary, luckily he made a really quick recovery from that. He moved on to high dependency and was showing great signs of improvement and just as we were getting ready to be discharged, Zak became unwell and ended up with an infection which extended our stay in Leeds.
“The 9 days we spent in hospital were made so much easier by the amazing staff at Leeds Children’s Hospital and CHSF.
“CHSF were brilliant. From beginning to end they supported us throughout Zak’s journey with everything from accommodation to just being a shoulder to cry on.
“What an amazing charity and we are eternally grateful for all the support that was provided before during and after. Katie Bear has become a huge name in our household, ever since Zak received her after his surgery they haven’t been apart, he sleeps with her every night ❤️.”
Wear red in Feb for the thousands of children in our region like Zak!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Unable to do your own Wear Red event this month?
Donate online to our Wear Red Day 2025 Justgiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085(e.g. To give £5 text: CHSFWRD 5 to 70085)
[Texts cost the chosen donation amount plus one standard network rate message]
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.
Alessia Mae is fast approaching her first birthday, but at birth she was sent urgently to her local hospital as she was critically low on oxygen and had open heart surgery at just a day old in Leeds.
Mum Tierney tells the full story…
“Alessia Mae was born on the 21st March 2024 with severely low oxygen levels. She was admitted to the NICU at Airedale where they suspected she had a problem with her heart that was causing the low oxygen.
“She urgently got blue lighted in an ambulance to Leeds Children’s Hospital. When she arrived they carried out a heart scan where she got diagnosed with critical pulmonary stenosis and other heart complications.
“Due to her diagnosis she required heart surgery at a day old to open up her pulmonary valve, that at birth was closed. Luckily the surgery worked and she was able to come off the ventilator the next day.
“She stayed at Leeds Children’s Hospital until she was 9 days old. After being discharged, we regularly attend cardiology appointments to monitor Alessia’s heart condition closely. In the future Alessia could be required to have heart surgery again.
“CHSF helped us throughout her treatment. They visited Alessia’s dad (Tom) on his arrival to Leeds hospital to explain what they did, how they could help and he received a very useful bags of goodies.
“Also, they ensured that Tom had accommodation during Alessia’s stay at hospital. During Alessia being on the ward it was Easter so, the CHSF visited all the children with the Easter Bunny and Alessia got a lovely Easter teddy!
“This was a lovely thing for them to do. It definitely cheered us all up and made us feel some sort of normality after being in hospital for nearly two weeks.
“If it wasn’t for the cardiology team and the amazing care we received at Leeds, Alessia wouldn’t be here today. So CHSF is a charity that is very close to our heart because they support the Leeds Congenital Heart Unit, the children and their parents.
“Without their incredible fundraising we might not have our beautiful baby girl today!”
Wear red in Feb for the thousands of children in our region like Alessia Mae!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Unable to do your own Wear Red event this month?
Donate online to our Wear Red Day 2025 Justgiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085(e.g. To give £5 text: CHSFWRD 5 to 70085)
[Texts cost the chosen donation amount plus one standard network rate message]
Spread the word: Tell your friends, family, school or business all about our campaign – and how easy it is to sign up! Thank you.