A family from Eastbourne is pleading with everyone to have the discussion about organ donation.
Nick and Amy Brace are currently hoping a heart will become available for their 5-month-old daughter, Marnie, who’s in hospital in London with Noonan's Syndrome and hypertrophic cardiomyopathy. Baby Marnie is in desperate need of a new heart and her mum, Amy, has spoken of the anguish at waiting for another child to die in order for hers to live saying, “I found the concept that another child should die for Marnie to get a new heart a difficult one to stomach. But I’ve been taken aback by the messages of support I’ve received from people saying other parents would take comfort in their tragedy being able to help us.”
Amy and her husband, Nick, want all of us to sign up to the organ donor list and to register our children too. They don’t want other families to have to suffer as they are having to do, having been told a transplant is the only option available to Marnie. Amy says right now would be a perfect time for a heart to become available to them, as Marnie is relatively stable, despite the extra strain being put on her as she starts to teeth. Doctors are doing all they can for the child, who’s currently on an experimental level of medication to help keep her heart strong, but it’s so oversized, Amy says her daughter has virtually no chambers within the heart itself.
“I’m in awe of Marnie,” Amy told Eastbourne Buzz, “She’s a fighter. It’s horrific to be going through this, but both Nick and I think, if Marnie can be this strong, then we can be too.”
Nick and Amy, who have another child, 21-month-old Jonah, are hoping to change the law, meaning that everyone is automatically an organ donor, but has the choice to opt out. They’re calling for as many people to sign the petition as possible, with 100,000 signatures needed to force a debate in Parliament. Their hope is that if the law can be changed, fewer families will have to endure the heart-breaking situation they’re currently in.