Maisy was diagnosed with Down syndrome shortly after birth, and at just 7 months old, she had open heart surgery at the Leeds Congenital Heart Unit.
Her mum Laura has kindly shared their journey – from diagnosis, and the care Maisy received, to the support they’ve had along the way from CHSF…
“Maisy’s diagnosis was postnatal, towards the end of my pregnancy. I was in hospital a lot due to raised PI (pulsatility index) so I was induced at 37 weeks.
“Not even 12 hours after her birth, I thought I saw some characteristics and brushed them off – but a paediatrician said to us she thought Maisy had Down syndrome.
“Maisy is our fifth child so this was such a huge shock, and at that moment I just remember sobbing my heart out. A week later after taking her bloods she was officially diagnosed.
“With this diagnosis, as most will know, can come other health conditions. Maisy had a hip scan, all was well – and at 6 weeks old she had her all-important heart scan.
“We were running late for the appointment, so my husband dropped me and Maisy off and the plan was he’d wait in the car as we naively thought everything was going to be ok.
“It wasn’t…and I called my husband to come in while once again sobbing my heart out. From the get-go, the team in clinic were amazing, informative and extremely supportive.
“Maisy attended a few more appointments and by 2 months old she was placed on the priority list. After a couple of disheartening cancellations (which of course we understood) Maisy’s time finally came.
“We came into the LGI on 15th April and I did not sleep well that night. My husband went back home to be with the other kids, and I couldn’t sleep. I was worrying about emergencies coming in and her surgery getting cancelled again – my anxiety was through the roof.
“At 7am on the 16th April, my husband was back with us and we were greeted by a couple of people from the unit. By 8:30am, we were walking to theatre with our 7-month-old baby who at the time was very wheezy, had a constant cough and had noisy breathing.
“The hardest part by far was leaving her and walking away.
“Then the wait just felt like a life time. At 2:30pm we finally got the call from her surgeon and the instant relief I felt. Almost like I could suddenly breathe again when he said, ‘she’s doing really well and the surgery went really good, she’s on a light sedation you can come see her in an hour.’
“Well, I’m sure you guessed it I cried again with relief. I was so happy this part was over.
“When we went up to see her it was a shock, but surprisingly I did not cry it was as if I knew that equipment was there to help her. The staff on PICU (L47) were all so lovely and friendly. They were so happy to answer every question I asked – and there was a lot of them! They allowed me to help with washing Maisy and changing her bedding, but I was so desperate to get those mum duties back.
“CHSF has helped me and my family so much…they’ve helped us with so many things because as usual everything comes at once.”
“3 days post op Maisy’s breathing tube came out and 5 hours later I could hear her voice coming back. She was so ready to start shouting again. But even the day when she came back from surgery, her legs were going just like they did before. My little baby girl was holding back that little character inside.
“My husband was back and forth as he is the only one who can drive, and I stayed with Maisy for the duration of her stay in hospital. When I first met someone from CHSF the instant support was just amazing.
“5 days post op, off we went wheeling back to Ward L51. The first night she she stayed on high dependency and the next I was back with her. 2 days later (8 days post op) we went home!
“Maisy’s strength has made me stronger – watching her go through something so huge has been hard but it’s made me look at life so differently. She’s a little superstar.
“CHSF has helped me and my family so much. They’ve supported us through the journey of Maisy’s surgery and the journey so far with this heart condition, but they’ve also helped us with so many other things because as usual everything comes at once.
“Some cute certificates and Easter eggs for her siblings. Easter Bunny even came to give Maisy an Easter egg when she had to spend her first ever Easter in hospital. We’ve come away with some lovely keepsakes, her Katie Bear is the cutest. I will cherish them all forever and one day I will tell Maisy how amazing you all were at CHSF.
“The lovely Lucy even helped me fill out a DLA (Disability Living Allowance) form which I just found completely overwhelming. She brought a Tesco voucher too and did an application for the Family Fund with me. Honestly don’t know how I would have gotten through it without all the friendly faces and people around the ward.
“Thank you all so much. I don’t quite know how we could ever repay you enough for your help – but your charity is just fantastic.”
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.
Blake’s mum, Chelsea, said:
“My partner Matthew and I found out that Blake had something wrong with his heart when he suddenly was really poorly on 30th September 2022.
“We took him to Chesterfield Hospital to be seen and Matthew and I were told he had sepsis, as well as two big infections. We were told he needed to be put on a ventilator and taken to Manchester to be in intensive care.
“Once we were in Manchester, we found out Blake had a heart condition called mitral valve regurgitation. It was severe and need to be operated on.
“After a week in Manchester paediatric intensive care unit, we were transferred to Leeds Children’s Hospital where Blake was seen by the cardiac surgical team straight away. They came up with a plan to operate as soon as possible which was very scary for me and Matthew.
“Blake had his first open heart surgery on 13th October, and his second on 25th October to have a mechanical valve put in.
“Children’s Heart Surgery Fund has helped me and Matthew so much. They brought us toiletries when we arrived at Leeds and had nothing with us. When we were low on funds they helped us with travel costs. This meant that our family could come up to Leeds support us when we needed it most.
“Thank you for everything you have done for us. It’s really helped having this extra support at a such hard time.
“Blake is now doing great. He’s like a normal toddler – gets up to mischief a lot! He goes to preschool, and he loves it. He has a check up on his heart every six months due to having a mechanical valve. So far the checks are fine.
“Blake recently became a big brother and he’s the best big brother.”
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.
written by mum, Abigail
“This is Albie. He is 6 and a half months old. At his 8 week check up, they discovered that he had a heart murmur.
“After being referred to Leeds General Infirmary at four months old, we learnt that Albie had Tetralogy of Fallot and will need open heart surgery. Fast forward two months, and we found ourselves bringing him in for that open heart surgery…
“This was the scariest time of our lives. Both his daddy (James) and I, held on tight to him in the hospital bed, kissing his head, his hands and his heart the night before his surgery. Feeling guilty for what he’s about to go through and all the ‘what ifs’ running around our heads.
“I was wondering how will he cope without mummy next to him every night, as we have always co-slept.
“The sun came up and it was surgery day! He was first on the list, however, understandably, some emergencies cases had come in so we spent the morning biting our finger nails, anxiously waiting for the call.
“I was so proud and relieved of how well Albie was dealing with the fasting. No bot bot since the night before, and he didn’t complain once. My happy smiley baby boy. He then yanked out his cannula, and before we knew it, its was 12:15pm and it’s time to go.
“He was smiling away at all the doctors and surgeons around him, then they put the mask on his face. He grabbed my cheek in a panic, looking to me for help, and the tears just exploded out of my eyes. His hand become weaker and that was it, he was asleep.
“It was time to leave him. Me and daddy gave him a huge kiss on the forehead, told him we loved him and we’ll see him soon. I placed his little bunny teddy next to him and we left the room.
“The next few hours were agonising. The surgery in total, was 7 hours long, and we were so relieved when we were told that everything went okay, and we can see our little boy in an hour.
“It was coming up to 8:45pm, and we were allowed to go see Albie in PICU (ward L47). The cheeky boy had his eyes open a little bit and stared straight at us, then they closed again. We were told that he is highly sedated but he still keeps fighting the sedation. We managed to crack a smile stating ‘that’s Albie!’
“I had never even imagined what it would feel like to see my tiny little baby with so many wires and tubes going into him. It was scary. My emotions were running wild. The nurses on L47 are astonishing. They made sure Albie, myself and James were always comfortable. It definitely wasn’t easy leaving him to go get some sleep ourselves. But we made sure we was back at his bedside early each morning.
“The next morning, Albie opened his eyes again. He stared into my eyes and began crying. The weirdest part to see was, that because of the tubes in his throat and the anaesthetic still waring off, no noise came out of him, but his face and body movements showed us that he was screaming! Finally, I was allowed to hold him. This was overwhelming with all the tubes and wires, quite difficult in fact, along with the fact that I was worried of him having further discomfort. He struggled to settle on me, and that really made me cry. He’s a proper mummy’s boy and I was missing him.
“3 days post op, he pulls out his feeding tube, cheeky little sausage…and they decided it was time to bottle feed again as he was doing so well. The nurses included me in changing him which helped me mentally so much to have some parenting back in my life.
“4 days post op, daddy haves to go back to work so I’m anxiously alone. I walk into L47, and I see 3 nurses making my baby smile. The matron on shift that day informed me that he woke up smiling today, and of course mummy over here cried with happiness. My baby boy is back.
“Later on in the day, after Albie was progressing so well, he is transferred back to the ward (L51). It was like a celebrity leaving. Every single person on shift made sure to show their care and say their goodbyes as his cot was wheeled out of there. I was so so happy watching him smile at them all. Knowing that he really was getting the best care a parent could ask for.
“We arrive on L51, instantly, the nurses get to it, to make sure Albie is comfortable and that they are fully informed of his case and introduce themselves to me. The day goes by, with regular checks, some scans and re-introduction to bottle feeding with his own bottles. His neck cannula was removed, his wound dressing, and eventually was only left with the wires for his ECG checks. Seeing his wound for the first time was very intense. It hit me. My little baby had just had open heart surgery, and now he’s smiling and giggling again. It’s amazing.
“The following day, now 5 days post op, Albie has done so well that he is ready to move rooms again and I can stay the night with him. That night was difficult. After having his ECGs done, he could not settle back down, and he screamed the ward down from 9pm – 4am. He just wanted to sleep with mummy holding him bless him.
“Day 6 post op rolled around and it was discharge day! Albie was in a fantastic mood and couldn’t stop smiling. It’s like he knew that he was going home.
“We have been home for just over 24 hours. He has been very happy, very sleepy and being a good boy taking his medicine.
“Everybody in LGI are all tremendous. From bringing cups of tea, changing his nappy, Allegra in PICU bringing over the crafts trolley so we could make some bunting for Albie, and of course, medically caring for our baby. We cannot thank them enough. You all saved our little boy and we are forever grateful.”
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.
Bonnie is two years old and was born with Atrial septal defect (ASD) and Ventricular septal defect (VSD) which were surgically repaired in Leeds at age 4 months.
She has just celebrated her second heart day on 4th May! Mum Charleigh tells us about Bonnie’s CHD journey so far…
Bonnie’s mum, Charleigh, said:
“Bonnie was diagnosed at 9 weeks old after a health visitor noticed something wasn’t right and she hadn’t been gaining weight. We were told to go straight to A&E where she was checked over by a doctor who then requested a scan because he heard a ‘whoosh’ sound in her chest.
“After the scan we were told that she had a hole in her heart and a curved septum wall which would need surgical repair as it was too large to leave and heal as she grows.
“Bonnie she was then put on two kinds of medication to help with the pressure her heart was under. She still wasn’t gaining weight, even on the prescribed milk, and was admitted to Sheffield Children’s Hospital to have a feeding tube to help with her weight gain.
“After this it was just a wait for surgery. She was put on a waiting list and after six days I received a phone call saying her surgery would be the following Thursday. It was all so fast from the initial appointment to the day of surgery and most of it was blur, but I remember being very scared – especially knowing how invasive the surgery would be.
“Bonnie has an older brother who stayed home with his dad, so it was just me and Bonnie at the LGI, but honestly the staff were some of the most lovely, friendly and caring people I have ever met and that includes the CHSF staff.
“If it wasn’t for CHSF I wouldn’t have had a place to stay so close by to her. You helped with meal vouchers, travel with it being so last minute and that’s just the physical part! The emotional side too – you all help so much with and the empathy you show families. I still have my ‘Comfort & Care pack’, and Bonnie of course still has Katie Bear. Her medal and certificate are in a memory box that will be cherished forever!
“Bonnie had a cardiology appointment in April and doesn’t have another for three years now which is huge.
“I work in retail and our store do Charity Grants. Staff can nominate charities that are close to your heart, and I nominated CHSF. I was so happy CHSF were chosen for the grant because my thank you’s will never be enough for all you do.”
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.
Featured in: Derbyshire Times, Worksop Guardian
A Derbyshire dad saddled up for a long bike ride to the coast over the weekend to add to the thousands his family have raised for a charity which supported them when his daughter was critically ill as a baby.
Hospitality trainer Kev Morris, 41, pedalled 150 miles to Skegness and back on Saturday, May 3, in support of the Children’s Heart Surgery Fund, accompanied by his dad Phil and brother Steve.
They set off from Kev’s Creswell home at around 4am and returned around 14 hours later, having successfully navigated any obstacle which threatened to derail their progress.
Kev said: “We had a lovely morning ride aside from cycling some of it in the dark. We saw the sunrise as we cycled east which was amazing, then arrived at Skegness to sunshine in just over five hours and 15 minutes.
“The ride home was just brutal though. The weather started to change just after we set off. It was windy, cloudy, raining and cold. By the time we got to Wragby the weather had started to pick up again however we were starting to feel tired after we passed Lincoln.
Children’s Heart Surgery Fund eased a lot of the family’s concerns when Isabel was critically ill as a baby.
Isabel will require further heart surgery during her teenage years.
“Then there was a car crash at Tuxford, and the paramedics on scene suggested we turn around due to the road being shut. Thankfully Nottinghamshire Police asked what we were doing and waved us through after seeing our t-shirts, nobody seemed to be seriously hurt. Had we been turned back we would’ve added more miles and hours on.
“We kept going by knowing why we were doing the bike ride and knowing every marker on the way home was a step closer to home.”
Natalie said: “When I was first sent up to Leeds, no one had really explained why. It was a big shock and we were just going up there blind. There were some scary moments.
“But from the minute we were first referred, the Children’s Heart Surgery Fund looked after us. Anything we ever needed, we could ring up and there would be someone there to help We’re very thankful for everything they’ve done.”
Kev added: “When Isabel was born she was in hospital for ten days. She was the patient so Natalie and I had to find somewhere else to stay – those hotel rooms would have cost us a lot.
“She’ll need another operation in the next next couple of years to help prolong her life by replacing the pulmonary valve between her heart and lungs, but other than that Isabel’s doing really well.
“She has nonverbal autism and sensory processing disorder but her cardio doctors are really impressed with her. People don’t believe me when we tell them she’s got a complex heart condition. She’s constantly moving and her energy amazes her teachers at Stubbin Wood.”
The Morris family’s appreciation for the charity has tallied up to around £19,000 in fundraising over the past few years. Natalie running regular event stalls and Kev making an annual tradition of the Sheffield Half-Marathon.
The trio’s specially-made cycling jerseys helped them navigate a police roadblock.
Kev Morris made an early start from the family home in Creswell.
Isabel won a number of community commendations during the pandemic too with daily sponsored walks.
Natalie said: “The charity makes such a huge difference. We’ve met lots of families in similar situations, and some who have lost their children. It’s heart-breaking but the fund keeps on supporting them afterwards.
“It pays for life-saving equipment, it’s built new operating theatres, it pays for a family support worker, gives keepsakes to the children and organises family days out. The charity even pays for a fish tank at the hospital, and it’s a big moment in the child’s recovery when they’re able to walk to it for the first time.”
In a previous fundraising venture, Kev, Phil and Steve took on a one-way bike ride from Skegness so they knew the round trip would be a tall order.
Kev said: “We get together to ride about every Saturday, but this was something dad always wanted to do. I don’t know why he waited until he was 68.”
Clowne resident Phil, who works at the Bilstein auto component factory in Staveley, led from the front.
Kev said: “It started off as pub talk but then we put a date on it and started training. It took about eight weeks to get to this level. There was a bit of trepidation in the last fortnight but once we got up to about 75 miles in a day we felt we could probably manage the rest.
“Dad’s probably the fittest of all three of us. If you see him walking you wouldn’t think he’d get on a bike – he shuffles around. But stick him on two wheels and I can’t keep up.”
The trio have already raised over £1,600 for CHSF and we couldn’t be more grateful. There’s still time to sponsor them if you can at www.justgiving.com/page/kev-morris-2911
Feeling inspired? Take on your own challenge to raise funds for CHSF!
8-year-old Aria was born with serious congenital heart conditions – coarctation of the aorta and aortic stenosis. She required open heart surgery at just 3 days old but it had to be delayed as she developed sepsis.
Mum Jodie picks up the story, including their family’s positive experiences of the LCHU, their fantastic fundraising over the years and how Aria is now a super swimmer!
Aria’s mum, Jodie, said:
“At just 16 days old, she finally underwent the surgery, but sadly, it came with complications. She developed vocal cord paralysis and laryngomalacia, which she still lives with today. You can still hear her stridor — especially when she’s laughing or running.
“At only 3 months old, she had to go through a balloon dilation because her aorta narrowed again. Now, at 8 years old, we’ve been told there’s a mild apparent leak near the area of her aortic stenosis. Despite everything, Aria continues to face each challenge with strength and resilience.
“Our experience at the Leeds Congenital Heart Unit (LCHU) was a mix of challenges and deep gratitude. From the very beginning, the staff showed incredible expertise and compassion. During Aria’s first surgery at just 16 days old, the care she received was exceptional, even though it was a very difficult time for us, we were also well looked after.
“The team explained everything clearly, supported us emotionally and treated Aria with such kindness. Over the years, through her balloon dilation and ongoing monitoring which is now performed at our local hospital with the team coming to us, we’ve always felt she was in safe hands.
“CHSF has been a huge support to us throughout Aria’s journey. During her treatment, they helped take some of the pressure off with practical support – things like accommodation near the hospital, which meant we could stay close to Aria without worrying about travel or costs. They also provided comfort items on the ward that made such a difference during long and emotional days.
“Even after her surgeries, CHSF has continued to be there for us offering emotional support, keeping us connected through events and just generally reminding us we’re not alone in this. Their presence has really helped us feel part of a community that understands.
“Aria got into swimming when it was recommended by her auntie when her cousins was having swimming lessons, because at the time Aria was in and out of different activity clubs and it was like she didn’t feel she “fit in” and we wanted her to have something active that she could enjoy and feel proud of, and at the time we thought swimming seemed like a great fit as well as a great life skill.
“She took to it really well as she pushed herself away from her fears and it’s now become a big part of her life as she was to pursue her dream performing at the Olympics later in life. “It does help her physically, of course, but also emotionally as now she feels free and strong in the water.
“When she first started in 2023 she was very shy of the water and us as parents are so proud of her achievements in a short space of time especially when some lessons she has to take time out of the water because of her losing her breath. But she jumps back in and pushes herself to be the best she can and she truly shown us nothing is stopping her chasing her dream. Aria has just passed another 2 badges which is amazing! (10 metres butterfly and 10 metres breaststroke).
“Now, soon to be 9 years old in July, she’s doing really well. She still has ongoing heart checkups, and some challenges with her breathing as she’s being diagnosed with asthma but overall, she’s thriving. She’s happy and active.
“Fundraising became such an important part of our journey, it’s our way of giving back and showing gratitude for everything Aria has received. Jordan and I have taken on all sorts of challenges and events over the years.
“One of the big highlights was when Jordan abseiled down the side of the Portland building, which was terrifying for me to watch but he’s a thrill seeker and it was so worth it!
“We’ve also ran raffles, organised football events and even ran a lottery bingo for so long. Our family, friends, and community were so supportive and it was amazing to see how many people wanted to help. Every time we fundraise, it feels like we’re not only supporting CHSF, but also honouring Aria’s strength and the care she’s received.
“To date we have raised a massive £14,454, which as parents doesn’t feel it touches the amount we deserve to give CHSF for what you all did for us as a family – and especially Aria!”
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.
The awesome team at Enterprise Mobility all got behind their colleague Francesca this February to celebrate Wear Red Day.
Francesca’s son Luca was born with congenital heart defects and needed life-saving open heart surgery at just one week old.
Francesca said:
“We found out that something wasn’t quite right when we attended our 12 week scan.
“After an appointment with the fetal medicine and congenital cardiology teams at LGI, we were told that our baby had a ventricular septal defect and coarctation of the aorta and would need open heart surgery shortly after birth.
“When Luca was born, he was taken straight to the neonatal ward at Leeds Children’s Hospital where he was put on medication and monitored closely. He was there diagnosed with a Hypoplastic aortic arch, multiple VSDs and atrial septal defects. At one week old, Luca underwent open heart surgery.
“After eight agonising hours, we received a phone call to say that the surgery had gone well, they had managed to close Luca’s chest. This was amazing news as we were told to plan for it still being open and him needing a second surgery to close it after the swelling of his heart had gone down.
“We were also informed to prepare ourselves to see him for the first time, as he was still on a ventilator and connected to multiple machines. I just remember seeing him and being so grateful that he was still alive.
“Luca spent the following 10 days on PICU, where he had ups and downs.
“He was extubated 2 days post-surgery but was struggling to breath on his own, so he was put on a BiPap machine to help.
What is a BiPap mechine? If you have trouble breathing, a BiPap machine can help push air into your lungs.
“He then moved to the high dependency unit for two nights and finally onto the children’s cardiac ward (L51) where we were able to sleep by his side for the first time since he was born.
“Our little heart warrior also had to have a keyhole procedure in November 2024. He is such a happy boy and thriving, we cannot thank the staff at the Leeds Congenital Heart Unit and CHSF enough for saving our boy!”
Feeling inspired? Want to do your own fundraising for CHSF?
Request your fundraising pack today and find out more about supporting our charity! Our dedicated team are there for you every step of the way.
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.
Bradford-based adult patient Louise McCormick received 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.
She isn’t taking her foot of the pedal this year either, and plans to take on 12 half marathons. See Louise’s JustGiving page.
Louise begins with her recollections of heart surgery back in 1991…
“I remember a lot of it surprisingly vividly! I was on Ward 7 in Killingbeck Hospital, which was the Children’s Ward that had a playroom, which I thought was brilliant – it even had a computer which was pretty exciting in 1991. Ward 7 was run by an amazing group of nurses that were always around with a smile, and although I spent some time on my own without my family, I rarely felt lonely or scared.
“I remember watching loads of episodes of the Poddington Peas on a TV and VHS that the nurses would wheel in for me, which felt very special, and I got so many cards and presents, it was like Christmas!
“I was also lucky enough to meet Frank Bruno while I was intensive care; he came to open the new shop at the Killingbeck site, which made it into the local newspaper. Very exciting!”
Louise with boxing legend Frank Bruno when he visited the children’s heart ward at Killingback in 1991
“I remember being given a blue Katie Bear and a certificate for my stay in the hospital, which was signed by my surgeon Duncan Walker and I vaguely remember going to a Christmas event that year organised by Children’s Heart Surgery Fund. I still have all of my merch from my time in hospital, which I consider to be an incredibly significant time in my young life and I’m so grateful for the support my family received during what must have been a very scary time for them. I was just happy having 6 weeks off school!
Louise with Nurse Mike Fresson, who still works at the Leeds Congenital Heart Unit today | Louise in the playroom on Ward 7 with Sheila | Louise and Nurse Ruth on Ward 7 (and her original blue Katie Bear)
“I wanted to celebrate my upcoming 40th birthday with something huge that would provide me with a great opportunity to do some fundraising for the charity who had supported me as a child, and commemorate the fact that if I not had my heart surgery, I would not be well enough to do any running now and my life would be very different.
“So through Sports Tours International I signed up for the 2024 New York Marathon, which to date is the biggest marathon in the world, ever! To help keep me on track for a year of training I also signed up to run the Leeds Half Marathon, Leeds 10K and the Great North Run. My medal collection is pretty impressive at this point.”
You’re amazing Louise! What would you say to other people considering running for a charity (including other adult heart patients)?
“Just go for it (with your heart specialist’s approval!) Find an event that excites and inspires you to work towards, get a training plan together and get your trainers on!
“There’s an absolute wealth of information about running available online, and given the popularity of running at the moment, there are in-person clubs and online running communities to make the most of and find inspiration in.
“Running is hard but you never regret a run. I’m very lucky that I’m able to run given my heart history, and I hope I can inspire others with a similar background to set themselves a challenge. I still have check ups every two years, but I’ve received nothing but encouragement from my heart specialist to keep running.
“I’m pleased to say I’m still running; I’ll be doing 12 half marathons in 2025, and hope to do another marathon in a few years when I’ll be able to continue my fundraising journey and raise some more vital funds for CHSF. In the meantime I will continue my role as Running Events Coordinator at Leeds based charity Epilepsy Action, and would strongly encourage any local runners to sign up for our Bradford 10k on 1st June – it’s a great opportunity to do some fundraising for CHSF and celebrate the City of Culture 2025!”
Feeling inspired? CHSF has a calendar of events, including running and adrenaline challenges and family days throughout the year.
Run for reason in 2025
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!
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