With thanks to Albert’s mum, Ellie, for sharing their family’s experiences with us.
“Our experience of congenital heart disease began at our 20-week pregnancy scan, where our son was diagnosed with Tetralogy of Fallot (ToF).
“This was an incredibly overwhelming and frightening time, particularly as we faced a long wait for the results of an amniocentesis for further genetic testing, which thankfully came back clear.
“Throughout the pregnancy, we attended numerous scans and appointments to monitor his condition and prepare for his arrival. Following his birth, Albert required a 10-day hospital admission and underwent a stent procedure at four days old.
“We attended clinic appointments every four weeks until he was seven months old. This was when Albert underwent open heart surgery.
“Unfortunately, his recovery was complicated by both bacterial and viral chest infections, and he became extremely unwell – making it a very touch and go and frightening time for our family.
“Albert spent two and a half weeks in intensive care before being transferred to Ward L51, where he remained for a further four weeks before he was finally well enough to come home.
“The entire journey was incredibly challenging, emotionally and physically, but we will always be grateful to the medical teams who cared for him and helped him through such a difficult start to life.
“Throughout our journey, Children’s Heart Surgery Fund helped us feel seen, heard and cared for during what was an incredibly frightening and overwhelming time for our family.
“The support CHSF provided made such a difference – particularly during the long hospital stays when we were navigating so much uncertainty and worry.
“Having access to accommodation and food vouchers helped ease some of the practical and financial pressures, allowing us to focus on being there for our son when he needed us most.
“The wellbeing support was also invaluable, reminding us that our own emotional wellbeing mattered too.
“Children’s Heart Surgery Fund helped us feel less alone throughout the journey, and we will always be grateful for the kindness, understanding and support they showed our family.”
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Share your experiences to help others realise they are not alone, and spread awareness of congenital heart disease and the pioneering work of the Leeds Congenital Heart Unit.
Leah and Brad found out the 20 week scan that their daughter, Mabel, had Coarctation of the aorta, a large Ventricular septal defect (VSD) and a smaller left side of the heart. She had open heart surgery at five days old.
Now Mabel’s family are taking on the Leeds Inflatable 5k to raise funds for CHSF, to say thank you for the care they received.
“Mabel was born in December 2025, but our heart journey began much earlier. At our 20-week scan, we were told that Mabel had serious heart problems. Like the 13 babies in the UK who are diagnosed with congenital heart disease (CHD) every day, Mabel would face challenges from the very beginning of her life.
“From that moment on, we were cared for by the amazing team in Leeds, and throughout our journey there were many charities that supported us. However, the charity that made the biggest difference to our family was Children’s Heart Surgery Fund.
“When Mabel needed open heart surgery, they gave us a place to stay near the hospital, providing us with so much more than just accommodation. We had our own private bedroom, bathroom, kitchen, dining area, living space and laundry facilities – a safe and comfortable place to stay close to our little girl while being so far from home.
“They also helped ease the financial pressures of our stay by providing money for washing facilities, toiletries, food and other essentials. Their kindness didn’t stop there. Mabel received a Katie Bear, a medal and a certificate to celebrate her incredible bravery after open heart surgery. Her big sister, Delilah, was also made to feel special with a Super Sister sibling certificate.
“Throughout our stay, Katie Bear paid visits with gifts, and the charity made sure Christmas was magical despite everything we were facing. On Christmas Eve, they brought presents for us and both girls, and on Christmas morning we woke up to huge bags of gifts waiting outside our door. During one of the hardest times of our lives, CHSF brought comfort, joy and hope when we needed it most.
“What many people don’t realise is that Children’s Heart Surgery Fund does so much more. They provide things like home heart-monitoring devices, training for cardiac staff – the list goes on. They are not a government-supported charity, so everything they do is only possible thanks to donations and fundraising.
“Quite simply, we couldn’t have made it through our journey without them.
“This is why on 20th June, me, Brad, Alicia and Kenisha will be taking on a 5K Inflatable Run to raise money for the incredible Children’s Heart Surgery Fund.
“We want to give something back to the charity that gave so much to us and helped carry our family through the toughest chapter of our lives. Every donation will help CHSF continue supporting children with heart conditions and their families, providing practical help, comfort and care when it is needed most.
“Thank you for supporting us, supporting Mabel, and helping other families facing a similar journey. Every mile we run is for Mabel, and for every child and family who needs the support of Children’s Heart Surgery Fund.”
A huge thank you to Leah, Brad, Alicia and Kenisha who are taking on the 5K Inflatable Run to raise funds for CHSF tomorrow! Please sponsor them if you can! www.justgiving.com/page/leah-rattenbury-1
A donation today helps us continue providing practical, family‑focused support to babies like Mabel and their loved ones throughout treatment and recovery.
Please help us continue to support more families who need us.
Because of the incredible work of the Leeds Congenital Heart Unit and because of your support, Kalina celebrated her first heartiversary on 3rd June this year.
Happy Heart Day Kalina from all of us at Children’s Heart Surgery Fund!
Kalina’s mum Karly-Kay said:
“It’s been a whole year since discharge.
“I still see blue themed corridors and hear the noises from being in intensive care, the sound of crash carts rushing to go save another child’s life and the goosebumps that follow. The “we’ve got this” look from fellow heart parents.
“I remember the long, sleepless nights. The drains coming from her chest and the endless wires in every direction I looked. The dressings, the stitches, the medications.
“But I also remember how her eyes lit up when she first saw us after surgery – like all was right in the world because her mum was there.”
“With a daughter like mine, the good will forever outweigh the bad. But this past week- marking a year since life-saving open heart surgery, we let ourselves feel, reminisce and remind ourselves how incredibly grateful we are to get a second chance at doing life together.
“7 hours , 8 minutes and 54 seconds in theatre for a lifetime of gratitude and love. Thank you Children’s Heart Surgery Fund for making miracles happen and thank you to Dr Giuseppe Pelella for saving my child’s life.
“I will never stop bragging about my heart warrior but also about every single person who has been a part of our journey to get to where we are. Every surgeon, every doctor, every specialist, every PICU nurse, every HDU nurse, every staff member on L51. You didn’t just save her life, you saved mine.”
A donation today helps us continue providing practical, family‑focused support to babies like Kalina and their loved ones throughout treatment and recovery.
Please help us continue to support more families who need us.
Heart mum Danielle shares her experience of daughter Matilda’s heart condition – from diagnosis at 20 weeks to the time they spent at Leeds General Infirmary and once home.
She’s now taking on a 100km Ultra Challenge to give something back to CHSF after the support her family received along the way.
“When I was around 20 weeks pregnant, I had an amniocentesis due to a suspected chromosome normality. It was during that scan that the consultants noticed a problem with Matilda’s heart.
“I was sent straight for a scan with the cardiology team and they initially diagnosed Hypoplastic left heart syndrome (HLHS). They said that Matilda would need several operations and may not live beyond five years old – which obviously broke us.
“But as her parents we had to keep fighting for her. I had scans every week – sometimes several times a week – and towards the end of my pregnancy, a scan revealed that it her heart issue wasn’t HLHS afterall and was Coarctation of the aorta (CoA) and Bicuspid Aortic Valve (BAV).
“I had a planned induction at Leeds General Infirmary (LGI) and we stayed there for around one month. Matilda had open heart surgery at five days old and had a keyhole surgery at five months old. She now has scans around every nine months and is doing amazingly well!
“During one of the most difficult and emotional times in our lives, CHSF were there in so many ways. Whilst in hospital we felt totally helpless, but Children’s Heart Surgery Fund were there to offer emotional support, and also financial support too. We lived in Eckersley House whilst there which we are extremely grateful for (CHSF make a donation towards this accommodation each year). CHSF provided us with a grant so that during the hardest time of our lives, at least the financial strain was reduced.
“They helped to provide food vouchers while staying in hospital, small but meaningful gifts like Katie Bear (their mascot teddy), certificates and medals for heart warriors, and crucial emotional and psychological support for families going through similar experiences.
“The Charity still support me now. I am in regular contact with the team and I am so grateful that I am able to turn to CHSF for support. Their social media page has also enabled me to reach out to other heart warrior mums which has helped so much. Thank you so much for all you have done for me and my family!
“On Saturday 4th July to raise funds for CHSF, I am taking on the Peak District 100km Ultra Challenge. I want to give as much back as I can and raise as much awareness as possible. In many ways, I keep thinking… ‘if I can get through those moments and the pain of seeing her go through that, then I can get through this challenge too.’ This run is my way of turning that experience into something positive.
“I’ve wanted for a long time to give something back but never felt able to do anything meaningful enough. I may not be able to change what we went through, but I can take on something that pushes me to my limits to help support other families who will go through the same thing.”
Danielle is taking on the Peak District 100km Ultra Challenge to raise money for CHSF and to support other families going through similar experiences. If you’d like to support her, you can donate at www.justgiving.com/page/danielle-nugent-5
Matilda turned 2 on 24 May, because of you!
We want to shout the biggest “Happy Birthday” to Matilda from all of us at Children’s Heart Surgery Fund.
We hope you have the best day!
A donation today helps us continue providing practical, family‑focused support to babies like Matilda and their loved ones throughout treatment and recovery.
Please help us continue to support more families who need us.
With the London Marathon just days away, thousands of runners will be taking on 26.2 miles through the capital – each for their own very personal reason.
We’re incredibly proud of the runners who are part of #TeamCHSF this year, and are pulling on their trainers to raise vital funds for Children’s Heart Surgery Fund.
Meet Ollie dad to heart hero Alex…
What made you choose to run the London Marathon for Children’s Heart Surgery Fund?
“I’ve been running for over 10 years and have always dreamed of doing the London Marathon but never made it in through the ballot. I had considered going for a charity place but wanted it to be for a cause that was genuinely special for me.
“Then when my son Alex had heart surgery last summer he and my family received such fantastic support from the Children’s Heart Surgery Fund that I wanted to do whatever I could to raise awareness and money for this wonderful little charity.
“If I hadn’t got a charity place for London I’d have found another event to enter for CHSF, but as it happens I’m able to help CHSF raise funds at the same time as ticking off a bucket list adventure!”
Pictured: Ollie with his son Alex while in hospital, on Ward L51. Alex with his Katie Bear after surgery.
Can you share a little bit more about your connection to CHSF?
“My son Alex was diagnosed antenatally with a right aortic arch with aberrant subclavian artery; initially after birth these didn’t appear to be causing him any issues, but when we started weaning at six months it became clear that he was struggling to swallow solids.
“Eventually it was decided that surgery was required, which he underwent at Leeds General Infirmary in June 2025, when he was 17 months old. The care he received from the doctors, nurses and support staff in Leeds was exceptional, as was the support from CHSF.
“Thanks to CHSF my wife and I were able to stay in hospital accommodation to be close to Alex at all times, rather than driving back and forth between Leeds and Sheffield, and their daily trips to the ward to visit Alex with treats made his (and our) day!
“Nine months post surgery Alex is recovering really well and still loves the Katie Bear that CHSF gave him on discharge.”
How has your marathon training gone so far?
“It’s been eventful – despite being a regular runner I am increasingly injury prone and late last year had to have minor surgery myself to repair an abdominal hernia, which forced me to rest for several weeks and restarted my training from a lower base of fitness.
“It’s always tough marathon training during the cold and wet winter months – I’m hoping that marathon day itself isn’t too hot as I’m not prepared for warm weather running, although I did manage a few short, sweaty runs on a family holiday to Gran Canaria in January.
“One of my good friends, Andy, is also running the London Marathon for CHSF, so we’ve done some of our longer training runs in the Peak District together, which has made them much more enjoyable.”
What’s been the most rewarding part of training? What’s been the most difficult part?
“The most difficult part is heading out on 3+ hour runs on a freezing Sunday morning when all you want to do is enjoy a lie in and leisurely breakfast with your family, particularly after you’ve worked all week and so haven’t spent as much time with them as you’d like.
“And forcing myself to do strength training to avoid injuries when I’d much rather just run!
“But it’s been rewarding to see my fitness slowly coming back after my enforced break following surgery and to discover that I am still capable of running long distances.
“I ran the Sheffield Half Marathon on 29 March (which I do every year), but this year it was a training run rather than going for a fast time – I’m hoping that will be a rewarding experience if it turns out I can hold my marathon pace for that long…”
Do you have a goal for marathon day?
“My main goal is to enjoy the day and take in as much of the atmosphere and experience as possible – I’ve wanted to do this for a decade, and may never do it again, so want to make the most of it.
“That said I am quite competitive and have set myself a challenging goal time which I won’t reveal here in case I’m miles away!
“A few people have promised to increase their sponsorship if I achieve my goal so that’s an extra incentive, but if I can cross the line still smiling that will be an achievement!”
What does supporting CHSF mean to you?
“It means a huge amount – it was a charity I hadn’t heard of before Alex’s surgery, and I’m always keen to help smaller charities that don’t necessarily get the exposure of the major charities that we’re all aware of (I used to be a trustee for a small charity set up by some friends that supports bereaved families and have raised funds for them in the past).
“Having seen how the work of CHSF lifts the spirits of children (and their families) going through really difficult times I think it’s such a worthwhile cause, and knowing that I can help other families going through what we did have a much more (Katie)bear-able experience is going to really motivate me on marathon day.”
Is there anything you’d like to say to the people who’ve supported or sponsored you?
“Massive thank you – I’ve been overwhelmed by how generous people have been, including donations from people that I don’t even know or who I’ve not seen for years.
“Some have even helped by sharing the link on their own social media channels which has been fantastic.
“I was worried about hitting my fundraising target but did so nearly two months before the marathon, so thanks again to everyone who has supported me and wished me luck!”
Where can people donate to your fundraising page?
And finally, what’s your go-to motivational running song?
“I have whole playlists dedicated to running, but without wanting to be too obvious ‘Born To Run’ by Bruce Springsteen always puts a spring(steen) in my step!
“Alex’s favourite phrase right now is ‘Run Daddy, Run!’ which I have engraved on some lace tags on my running shoes and which I will have in my mind through all 26.2 miles on the big day.”
A huge thank you to all our #TeamCHSF 2026 London Marathon runners!
We’re so proud of every single one of you and wish you the very best of luck on race day.
With the London Marathon just days away, thousands of runners will be taking on 26.2 miles through the capital – each for their own very personal reason.
We’re incredibly proud of the runners who are part of #TeamCHSF this year, and are pulling on their trainers to raise vital funds for Children’s Heart Surgery Fund.
Meet James uncle to heart hero Arthur…
What made you choose to run the London Marathon for Children’s Heart Surgery Fund?
“In October 2018, CHSF were there for my family when my nephew Arthur had to have open heart surgery at only 8 days old. They helped my family through letting my sister and brother-in-law stay in the onsite accommodation and supported them throughout this really difficult time.
“I ran my first ever marathon for CHSF as at the time it was around 6 months after Arthur had had his surgery, and have taken part in many other fundraising events for them since through running and bucket collections etc.”
How has your marathon training gone so far?
“I’m really enjoying the training, I think it’s going well. I’ve had little niggly injuries and colds etc but that’s all part of it so just being cautious.
“I’m also running the marathon with Arthur’s dad Tom so we’ve managed to do a few long runs together which has been great to have the company “
What’s been the most rewarding part of training? What’s been the most difficult part?
“I love running so the feeling I get after any run is great, but knowing you’re running for CHSF is a great motivator.
“I have two children (a one year old and 4 year old) so fitting the training round them and work schedules can be difficult but I just get out when I can so that I don’t miss out on family time and try make the most of each run.
“My favourite runs are buggy runs with my kids, mainly at parkrun.”
Do you have a goal for marathon day?
“Number one is to enjoy it and soak it all in! I’m always wanting to run to my potential but that all depends on the training, which means I’ll have to do a few runs in my heart costume soon!”
James will be running the London Marathon dressed as a big love heart with the CHSF logo on the front!
He should be pretty easy to spot in the crowd or on TV so if you do see him make sure to give him a big cheer and try to snap a photo.
What does supporting CHSF mean to you?
“It means a lot, giving back for what they did for my family and seeing the great work they continue to do daily for patients and their families!”
Is there anything you’d like to say to the people who’ve supported or sponsored you?
“A huge thank you! The money will go such a long way and help so many families like they did mine!”
Where can people donate to your fundraising page?
And finally, what’s your go-to motivational running song?
“People Watching by Sam Fender, it’s my kids favourite which we dance to in the kitchen daily so it always gives me a boost!”
A huge thank you to all our #TeamCHSF 2026 London Marathon runners!
We’re so proud of every single one of you and wish you the very best of luck on race day.
With the London Marathon just days away, thousands of runners will be taking on 26.2 miles through the capital – each for their own very personal reason.
We’re incredibly proud of the runners who are part of #TeamCHSF this year, and are pulling on their trainers to raise vital funds for Children’s Heart Surgery Fund.
Meet Mark dad to heart hero Frankie…
What made you choose to run the London Marathon for Children’s Heart Surgery Fund?
“Our son Frankie was diagnosed with a heart condition in 2017, and in 2020 (right in the middle of COVID) he had to undergo open heart surgery. It was the scariest time our family has ever been through.
“Running the London Marathon is my way of giving something back. When you sit in a hospital waiting room while your child is in surgery, you realise how important the support around heart families is. If running 26.2 miles can help raise money to support other families going through that experience, it feels like the least I can do.”
Pictured: Mark on a training run. Frankie in hospital after open heart surgery in 2020
Can you share a little bit more about your connection to CHSF?
“Frankie had major heart surgery in 2020. Watching your child being taken into theatre for open heart surgery is something you never forget.
“Those hours waiting were incredibly hard, but the care and support around heart families makes such a difference. Today Frankie is doing amazingly well – full of energy and personality – and seeing him thrive is something we’ll never take for granted.
“That’s why this cause means so much to our family.”
How has your marathon training gone so far?
“Training has been an adventure in more ways than one.
“Because I travel quite a bit, my runs have taken me to some pretty different places — from early morning runs in London, to squeezing in miles in the Florida heat in Tampa, to getting out along the coast while in Spain. It’s been a great way to see places from a different perspective, even if sometimes it means running very early to beat the heat or the crowds.
“One of the more memorable moments was when I managed to get completely lost on what was supposed to be a routine run. What started as a planned route quickly turned into an unplanned extra few kilometres while I tried to figure out where I actually was. At the time it wasn’t ideal, but looking back it’s part of the fun of marathon training – sometimes you just have to keep running until you find your way home.
“Overall it’s been a mix of great runs, tough runs, and a few unexpected detours, but every mile gets me a little closer to the start line in London.”
What’s been the most rewarding part of training? What’s been the most difficult part?
“The most rewarding part has definitely been having my kids cheer me on. Seeing them get excited about the training and asking how the runs went has been really motivating.
“It’s also been great to see the physical progress – dropping some of that extra weight and feeling myself getting stronger and a little faster each week. Those small improvements really add up over time.
“The hardest part is simply finding the time to fit the training in around everything else going on in life. But the funny thing is that once I get out the door and start running, it usually becomes the most rewarding part of the day.”
Do you have a goal for marathon day?
“Honestly, finishing will be a huge achievement!”
Where can people donate to your fundraising page?
https://2026tcslondonmarathon.enthuse.com/pf/mark-sweeney-chsf
“Today, Frankie is a thriving young lad – full of laughter, obsessed with horses and always on the move. He’s here because he got the care he needed in time. Not every family is as fortunate.
“Your donation, whatever the amount, will help another child like Frankie get their chance at life.”
What does supporting CHSF mean to you?
“It means helping families who are going through one of the most frightening moments of their lives. When your child needs heart surgery, the world suddenly feels very uncertain.
“Knowing there’s support around you – emotional, practical, and medical – matters more than people realise. If I can help provide that support for even a few families, it’s worth every mile.”
Is there anything you’d like to say to the people who’ve supported or sponsored you?
“Just a huge thank you. Every donation, message, and bit of encouragement means a lot to us. It’s not just supporting a marathon run, it’s supporting families who are facing incredibly tough situations. We’re really grateful.”
And finally, what’s your go-to motivational running song?
“It has to be Under Pressure by Queen and David Bowie! It feels fitting in more ways than one. The build-up, the message, the reminder that even under pressure you keep going… it mirrors marathon training (and life) perfectly.
“And when I need an extra surge of energy, it’s Thunderstruck by AC/DC. If that opening riff doesn’t make you pick up the pace, nothing will. Perfect for the final miles!”
A huge thank you to all our #TeamCHSF 2026 London Marathon runners!
We’re so proud of every single one of you and wish you the very best of luck on race day.
With the London Marathon just days away, thousands of runners will be taking on 26.2 miles through the capital – each for their own very personal reason.
We’re incredibly proud of the runners who are part of #TeamCHSF this year, and are pulling on their trainers to raise vital funds for Children’s Heart Surgery Fund.
Meet Tizzie mum to heart hero Bram…
What made you choose to run the London Marathon for Children’s Heart Surgery Fund?
“I’m running for CHSF because they were part of saving my son’s life.
“When Bram was born, we were urgently sent from Grimsby hospital to Leeds Children’s Hospital where, after 24 hours, the hospital said they thought they could fix him.
“Bram needed open heart surgery at 10 weeks old as without that surgery he wouldn’t live. Those 10 weeks waiting for this appointment to come through were very long. Bram’s feeds took at hour for him to drink very little and had to be repeated every 2 hours.
“Following a massive 8 hour operation at 10 weeks old, surgeon Carin Van Doorn fixed our son and changed our lives forever. He went from a grey coloured very poorly baby to a pink glowing baby who could thrive and grow.
“He is now 12 years old and a determined, resilient, confident young man. I want to raise this money to say a very small thank you from us to them.”
Pictured: Bram as a baby, after open heart surgery. Bram now, age 12, skiing
How has your marathon training gone so far?
“I’ve absolutely loved challenging myself. I am a runner and belong to a run club – Prep by Page – but this will be my second ever marathon. I am also running the Manchester Marathon the weekend before!
“Training has been a lot. From getting up in the dark to walk the dogs before running anything from 15-20km every Sunday morning, it has now become my norm.
“I am very proud of myself and when it gets tough I just think ‘if my son can go through what he did I can move my legs a bit longer and further.’“
What’s been the most rewarding part of training? What’s been the most difficult part?
“The PBs. In this training block I got a PB in Leeds 10K Abbey Dash and Scunthorpe Half Marathon but more than that I am proud of my tenacity, dedication to the cause and determination to succeed.
“The most difficult part is questioning if I can make it that far on the day without stopping and walking. But if I do it really doesn’t matter as this is about the money raised not my running.”
Is there anything you’d like to say to the people who’ve supported or sponsored you?
“I would like to shout out Frederick Gough Charities Committee and the school where I work in general. I raised £500 from friends and family and they have raised the rest. They have organised all sorts of different activities and really got behind me. This makes me very proud and incredibly grateful. I find trying to raise money very difficult whereas the Charittees Committee took the challenge and have absolutely run with it. This school is a very special place and I will be thinking of all of their amazing donations on the day.
“I’d also like a thank you to Ryan Page for the most incredible training plan and making me achieve things I never thought possible.
“Finally, the Silvesters: Troy, Gray and Bram – THANK YOU. It isn’t enough but you are the BEST and I love you.”
Do you have a goal for marathon day?
“Under 4 hours is the dream. 3.45 would be unreal. But just finishing and raising money for a charity that means so much to me and my family is the main goal.”
What does supporting CHSF mean to you?
“Everything. It is the least I can do.”
Where can people donate to your fundraising page?
https://2026tcslondonmarathon.enthuse.com/pf/elizabeth-silvester
And finally, what’s your go-to motivational running song?
“Never Forget by Take That – this reminds me of my mum. Special songs make you move.”
A huge thank you to all our #TeamCHSF 2026 London Marathon runners!
We’re so proud of every single one of you and wish you the very best of luck on race day.
With the London Marathon just days away, thousands of runners will be taking on 26.2 miles through the capital – each for their own very personal reason.
We’re incredibly proud of the runners who are part of #TeamCHSF this year, and are pulling on their trainers to raise vital funds for Children’s Heart Surgery Fund.
Meet Andy dad to heart hero Arthur…
What made you choose to run the London Marathon for Children’s Heart Surgery Fund?
“I have wanted to do the London Marathon since I started running and can’t think of a cause closer to my heart than CHSF after the support they gave us when our son Arthur had to have heart surgery in Leeds when he was just 4 months old.”
Can you share a little bit more about your connection to CHSF?
“At a few days old, Arthur was diagnosed with a Ventricular septal defect (VSD) and an Atrial septal defect (ASD) – two holes in his heart – after a nurse noticed he had a heart murmur during some routine observations.
“We were initially told the holes might close in time as Arthur grew but following further scans, we got the news he would need surgery in Leeds which was really scary and upsetting.
“CHSF provided us with information about the procedure Arthur was going to have, what to expect in the run up to and on the day of the operation, and during recovery, which helped with the fear of the unknown.
“Prior to his operation, Arthur was struggling to put on weight. He was given a nasal feeding tube and was on diuretics to help his breathing because he had fluid on his lungs, so it was a really tough time. Despite it all he was such a happy and brave little boy and we had great support from the cardiac team in close to home Sheffield that CHSF helps to fund – especially Cardiac Nurse Specialist Sally Roberts and Consultant Paediatric Cardiologist Daniel Velasco Sanchez.
“Arthur’s surgery was performed by the wonderful Giuseppe Pelella, and we will forever be grateful to him and all the doctors, nurses and staff at Leeds Congenital Heart Unit. CHSF provided accommodation so we could stay onsite for the duration of Arthur’s stay in hospital, which was a great comfort as it meant we could take it in turns to get some rest when we weren’t at his bedside.”
Pictured: Andy with his son Arthur
How has your marathon training gone so far?
“It’s been going well although finding the time to get out running three or four times a week has been a challenge.
“I am training with my friend Ollie who is also running London for CHSF and we do our long runs together at weekends and keep each other going – it’s been great to see his little boy Alex doing so well after his operation too.
“I particularly enjoyed a run round Derwent dam and reservoir on a beautiful early spring morning, and seeing a Kingfisher in Endcliffe park during another early morning outing.”
What’s been the most rewarding part of training? What’s been the most difficult part?
“After the Sheffield Half Marathon at the end of March, a family stopped me to ask for details of how to sponsor me as their little girl (who was excitedly pointing out Katie Bear on my CHSF running top) had had two heart surgeries in Leeds, so that was really nice.
“I also got talking to a mum in the gym whose baby girl had recently had surgery in Leeds and she sponsored us too.
“The hardest part has definitely been the weather – 16 miles in the snow with a bitterly cold headwind and hailstones was not so nice!”
Do you have a goal for marathon day?
“I would love to dip under the 3-hour mark, but I just want to enjoy the day and the atmosphere. I have previously done the Leeds Marathon for CHSF and the support there was fantastic, but London is the most famous marathon in the world so I am really excited to be taking part.
“My mum came to cheer me on in Leeds which was lovely but to have Laura (my wife) and Arthur there this time will make it extra special, and I think some other family and friends will also be supporting along the route so that will be really nice.
Pictured: Andy with Ollie, Tommy Frank and CHSF’s Keely at Sheffield Half Marathon in March
What does supporting CHSF mean to you?
“I never realised how common congenital heart defects are and when Arthur was diagnosed it was such a shock to us. We are so grateful for the support we received from CHSF and I am just really pleased to be able to give a little back to help ensure that other families who have little ones that need heart operations can also receive that help and support. “
Is there anything you’d like to say to the people who’ve supported or sponsored you?
“To everyone who has donated just a massive thank you – this is the third event I have done to raise money for CHSF, and I am really grateful for people’s continued generosity.
“I would also like to say a big thank you to our families for their love and support, you are all amazing! A special mention to Laura for putting up with all the running, for cooking the best post-run meals, and for being an absolute supermum to Arthur.
“And to Arthur – sorry I won’t win the marathon and thank you for always pointing out how sweaty Daddy is when I get back from my runs!”
Where can people donate to your fundraising page?
And finally, what’s your go-to motivational running song?
“I’m Still Standing by Elton John, or ‘Johnny’s song’ (from the film Sing) as it’s known in our house – it’s one of Arthur’s favourites and always reminds me of why I keep going when it starts to hurt!”
A huge thank you to all our #TeamCHSF 2026 London Marathon runners!
We’re so proud of every single one of you and wish you the very best of luck on race day.
In this blog, Zephyr’s parents Phil and Poppy share their family’s journey from an AVSD diagnosis at the 20‑week scan through premature birth, hospital stays and surgery, to getting Zephyr ready to head home.
He also reflects on the practical support Children’s Heart Surgery Fund provided along the way, from time on the ward to help for the whole family.
“We found out about Zephyr’s Atrioventricular septal defect (AVSD) at our 20 week scan.
“We didn’t truly know how to process for the diagnosis, but we knew from day one that we weren’t going to let it stop us raising the most awesome little man possible.
“Zephyr was born 7 weeks early and spent 5 weeks in neonatal care. We had him at home with us for around a month and a half before we had to take him to hospital due to some respiratory issues.
“Fast forward 5 months, two separate long hospital stays, one pulmonary artery band surgery and taking things slow and steady with recovery – we are finally ready to get Zephyr home to his eagerly awaiting big sister, Aurora.
“Zephyr still needs his full AVSD fix but we could not have gotten through our journey without Children’s Heart Surgery Fund!
“CHSF have helped in more ways than they will ever know – from travel grants, Tesco vouchers, Cardiac Cafés, Wellbeing trollies on the ward, funded family activities and Zephyr’s Katie Bear – to just general weekly check-ins and catch ups from Sarah and the Family Support team.
“A special thank you to Sarah for always making sure we had everything we needed, nothing was ever too big or too small to ask.”
Your donation helps us continue providing practical, family‑focused support to babies like Zephyr and their loved ones throughout treatment and recovery.
Please help us continue to support more families who need us.