Thornliebank mum's plea to find a new heart for son

Fiona and Paul Sneddon spend every day anxiously waiting for a phone call that will change the course of their son’s life and give him the chance of a brighter future.

The adorable seven-year-old is suffering from chronic heart failure and has been waiting over three years for a suitable donor.

Fiona, 41, keeps a suitcase packed with Jack’s belongings sat by the door, ready for the call to say a match has been found so they can make the hospital dash that they pray for each day.

She knows while other children will be writing letters to Santa and unwrapping gifts this year, her son is facing a fight for life.

Fiona explained how her heart bursts with pride each time she wraps her arms around her ‘wee fighter’, who she says has kept on smiling through all of his health struggles.

Jack Sneddon (Image: Mark Gibson)

The mum-of-one added: “Jack’s an incredibly bright and bubbly boy. Looking at him you wouldn’t know anything was wrong, but the reality is that his heart is failing. We know that time with him is precious and we don’t take anything for granted.

“He desperately needs a transplant and we live in hope each and every day that the call will come that will change our son’s life. For the phone to ring before December 25 would be the best Christmas present any of us could wish for.

“Jack’s suitcase is always packed and ready to go. We dream of the day that we will lift it and head out the door to hospital. A successful transplant is his only hope for a future.”

Fiona says the gruelling operation is a worry in itself, but knows her son’s indomitable spirit will allow him to face it head on.

She added: “It’s a massive surgery for anyone to go through, let alone a wee boy at just seven-years-old, but he’s our very own superhero. He is so brave and I know he can get through anything life throws at him.”

Fiona, from Thornliebank, was 20 weeks pregnant when she was told that Jack was suffering from a rare heart condition known as Hypoplastic Left Heart Syndrome.

After being born by emergency c-section, Jack was flown to Evelina London Children’s Hospital for emergency open heart surgery at just two days old.

He also suffered with a serious bowel condition, battled through three mini strokes and overcame three cardiac arrests as he continued to amaze medics.

Fiona, who works as an admin and payroll manager, explained: “Jack was so ill and the experts for his condition were based in London, so we had to spend the first six months of his life there.

“It was so difficult seeing him go through major operations. He was fed through a tube until he was 19-months-old but he’s always been so courageous. He deserves the second chance a new heart would offer him.

“Jack coped really well when we got home, but at two years and eight months he faced another major heart surgery which proved unsuccessful. At that point we were told that he was in heart failure.

“It’s the news no parent wants to hear and immediately you fear the worst. We were told that he needs a transplant to survive. It’s his only hope, but we also know that means another family having to make a very difficult decision, which is also upsetting.”

Jack was put on the transplant list in April 2020 and his family remain on standby to travel to a specialist hospital in Newcastle for Jack to have surgery.

Currently there are a significant lack of child organ donors, resulting in children and their families waiting for a donation that tragically sometimes never arrives.

Jack is one of 15 children in Scotland waiting on an organ transplant and his family are now backing a new campaign, Waiting to Live, to encourage parents to consider organ donation and, it is hoped, register themselves and their children as donors.

As part of the campaign, a handmade doll of Jack and others waiting on a transplant will be placed in hospitals across the country. Each will wear a badge inviting people passing by to scan a QR code and hear stories of children waiting for surgery.

Fiona added: “A transplant for Jack would mean hope, a fresh start, but it is something we can only dream of at the moment.

“Organ donation is such a difficult subject for both children and adults. It would bring me comfort knowing I was giving other people a chance to live, but not everyone feels the same way. I would ask people to think about it and share their wishes with family and friend, anyone you help will be eternally grateful.

”Jack’s doll is on display at the Evelina London Children’s Hospital, where he spent the first six months of his life. I hope it will inspire other parents and families to consider organ donation and add themselves and their children onto the NHS Organ Donor Register."

Angie Scales, lead nurse for Paediatric Organ Donation at NHS Blood and Transplant, added: “For many children on the transplant waiting list, their only hope is the parent of another child saying 'yes' to organ donation at a time of immense sadness and personal grief. Yet, families tell us that agreeing to organ donation can also be a source of great comfort and pride.

“When donation becomes a possibility, it is often in very sudden or unexpected circumstances. When families have already had the opportunity to consider organ donation previously or know already it is something they support, it makes a difficult situation that bit easier.

“By encouraging more young people and their families to confirm their support for organ donation on the NHS Organ Donor Register, we hope to be able to save more lives of children, both today and in the future.”

To learn more about the children waiting for transplants, hear children’s stories and add yourself and your child/children to the NHS Organ Donor Register, search for the Waiting to Live campaign online.

You can also watch the campaign film by clicking here.