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David Edwards avatar
David Edwards

Thomas Alfie Is On Berlin Heart Life Support In Need Of A New Heart

I am doing the Great North Run in Newcastle for CHUF because our son Thomas needs an urgent heart transplant

1075 %
£10,758
raised of £1,000 target
by 198 supporters
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  • Event: Great North Run 2015, 13 Sep 2015
  • Team: Team Tom

CHUF

CHUF's mission is to make life better for children and young people who are born with or who develop heart conditions by providing lifelong support to them and their families. CHUF supports children who receive treatment at Freeman Hospital and many other hospitals throughout the North of England.

Charity Registration No. 1160831

Story

Our 22 month old little superman Thomas is currently at the Freeman hospital in Newcastle upon Tyne which is one of 2 heart transplant hospitals for children in the UK.  His heart problems first started to make him sick when he was just 2 weeks old and has since undergone 3 major open heart operations at Birmingham Children's hospital where he was diagnosed with Shone's Complex, a rare congenital heart condition.  In May this year Thomas became critically ill and was transferred from Birmingham by the specialised KIDS team to the Freeman hospital where we were advised that a heart transplant would be Tom's only option.  Within 2 days of arriving he arrested and was fitted with a Levertronics system to support his weak heart. He was upgraded 10 days later to a Berlin Heart life support system which he is still on today.  

Tom's problems were further complicated when we found out in late May that his immune system was exceptionally strong with huge levels of antibodies in his system that left him untransplantable  therefore he was suspended from the list.  After lots of discussions, Tom has been put on a special regime of very expensive drugs and a blood washing treatment to try and get his antibody levels down to levels that would make a transplant more viable.  In late July we found out that the treatment had started to work and he was re enabled on the transplant list.  His antibody levels are still very strong today which means that only around 30% of donor hearts are likely to be suitable for Tom at the moment.  

We have included some photos and videos of Thomas during some of his happier moments here at the Freeman.  The Children's Heart Unit Fund (CHUF) have paid for an amazing indoor and outdoor play area at the hospital that gives sick children like Tom the opportunity to enjoy one of the most simple things that most mum and dads take for granted.  PLAYING. They also contribute to the great staff in the play area that spend time with many of the sick children on a daily basis.  They also fund some of the very expensive life support machines such as Berlin Hearts like the one that Tom is on.  Without this machine Tom wouldn't have survived.  If you can spare any amount for this great charity it will be greatly appreciated and well spent.

Facebook - Please friend me and share my top post. https://www.facebook.com/tomneedsaheart

Twitter - Please follow me. https://twitter.com/tomneedsaheart

Youtube Channel - https://www.youtube.com/channel/UCp8474BbnWrbZI3SA1z20pQ

Google+ Page - https://plus.google.com/106333493004351474048/posts

Organ donor registration page - https://www.organdonation.nhs.uk/register-to-donate/register-your-details/

View Tom's story on ITV news - http://www.itv.com/news/tyne-tees/2015-09-08/transplant-week-2015-the-20-children-waiting-for-hearts/

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Photos

10
  • Tom in a police car !
  • Thomas Alfie Edwards Freeman Hospital
  • +8

Supporters

198

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