The Incredible Story of a Little Superman

superIt’s been a year now that I brought to you the heartbreaking story of one of our members’s little boy who had to endure more than any child should. Many of you donated generously after I posted the story and I’m so very pleased to share some great news: Thomas received a new heart and is doing great! In fact, this is the most incredible turnaround story I have ever seen.

Recall the situation: Seven open heart surgeries, three cardiac arrests, two respiratory arrests..all before the age of two. Frankly things looked grim for little Thomas as he also needed a heart transplant, but the multiple surgeries had left his little body too weak and his immune system too compromised with the consequence that Thomas had to be taken off the transplant list.

t1After a regimen of special treatments and highly expensive drugs Thomas was able to get back on the transplant list, but his antibody levels were still strong which meant that only around 30% of donor hearts were likely to be suitable for Thomas at the time.

The bottom line: This little boy’s only hope of survival was a suitable donor heart.

His Dad Dave Edwards (@bigbadbearbull), said:

“Our world was shattered when we found out how critically ill our little boy was and just how rare Thomas’ condition was (Shone’s Complex). In March 2015 he underwent his biggest operation repairing and replacing three of his valves. After initially recovering well, he then had a pacemaker fitted and had a cardiac arrest in the operating theatre and was left incredibly weak and with further complications. 

In May 2015 Thomas became critically ill again and was in chronic heart failure. He then suffered another cardiac arrest and was put on an artificial heart device called the Berlin heart which kept Thomas alive.”

“As a parent you should never have to see your child go through all this suffering and pain. Our only remaining hope was that a donor heart would become available and we would receive that call one day. However there is an unprecedented waiting list for paediatric hearts and very few donors.”

Then finally some good news, knowing that good news is unfortunately very bad news for someone else’s family:

t4Just a matter of days before his second birthday, the family received a call to say a heart was available.

Dave’s wife Emma said:

“It was the best birthday present he could have ever hoped for. We are eternally grateful for his gift from an incredibly brave family that, from such a traumatic time of losing their child, have made such a brave decision and ultimately have saved our son’s life.”

But heart transplants, especially when the immune system is compromised, are risky:

“The heart transplant initially went very well and Thomas made an amazing recovery but sadly three weeks post-transplant, Thomas suffered acute rejection and unexpectedly had a cardiac arrest in front of us; something no parents should ever witness.”

But Thomas clearly had other plans as he wanted to live and he wanted a life and he fought for it more than most of us ever had to.

t2An amazing testament of never giving up: Nearly a year on, Thomas is now doing very well and is back at home following his first holiday since his heart transplant. 

Emma continued: “Thomas is a very unique little boy and he just simply loves life, with his cheeky grin he continues to put smiles on so many peoples’ faces. This time last year we would never have believed that our son would have had a heart transplant.”

None of this miracle would have been possible without the tireless dedication of so many people who care. Not only the incredible medical team, but also the support organization that made it all possible:

Emma said: “We are so grateful to the donor’s family, to Freeman hospital and to Scott House. Without The Sick Children’s Trust, who knows what we would have done for 11 months – we would have been separated from at least one of our children, and Daisy and Thomas have the closest brother, sister bond. 

t3For Thomas, seeing Daisy every day would light up his face, sometimes we thought Daisy was the best cure, better than any medicines – and it was possible for her to be there because of Scott House.”

Scott House manager, Andrew Leadbitter, said: “Thomas is an absolute star to have overcome every single obstacle that has been sent his way. To see him now brings such joy to our team. We see hundreds of families at Scott House who hope their child will be one of the lucky ones to receive a life-saving donor heart, and to see Thomas go home after 11 months of anguish was a very emotional moment.”

“We’re very humbled that they are fundraising for us as it costs the charity £30 to support a family for one night, so every penny Dave and his family raise will make sure that we can support more families, and help alleviate some of the worries and stress that they have when their child is seriously ill in hospital.”

To support help Dave raise money for The Sick Children’s Trust, people can visit visit https://www.justgiving.com/fundraising/ThomasAlfieEdwards

Thomas Edwards is a little superman. And donating makes a real difference. Thank you all who have contributed, are contributing and help share this incredible story of little Thomas Edwards.

More background: Facebook

1 reply »


This site uses Akismet to reduce spam. Learn how your comment data is processed.