You are here: News > Young EB sufferers highlight need for organ donors

Young EB sufferers highlight need for organ donors

 Young EB sufferers highlight need for organ donors

Grace, 13, and Freddie Fincham, 12, both have Desmoplakin Deficiency, a rare type of EB which causes weakness to the heart muscles. Grace recently received a heart transplant, but Freddie still needs a donor.

There is a shortage of young donors on the organ donor register and tragically, many children who desperately need transplants die before a donor can be found.

To boost the number of young organ donors, the NHS has launched a new strategy to support grieving parents and encourage them to donate their child’s organs, giving vital transplants to more children like Grace and Freddie.

Grace Fincham said, “I honestly have so much thanks to the family of the donor that donated my heart to me, even though they don’t know who I am. It felt amazing that someone give me the heart and now I get to live again.”

Freddie adds, “It’s torture really, because every night I sometimes imagine my mum coming in and saying Freddie, they found a heart and I just wish it could be over and done with.”

Grace and Freddie shared their experiences on the BBC’s Inside Out London to highlight the need for more young organ donors.

Watch the episode on IPlayer (see Grace and Freddie 18 mins 30 seconds in) here.

Find out more about the NHS’s young organ donor strategy and joining the organ donor register here

Thank you Grace and Freddie for being brave enough to share your experiences – you fight EB!

Make a difference

Make a difference

£25.00 
A MONTH

Could pay for one hour of research to bring us closer to finding effective treatments for EB.

Donate Today