Delhi: Marnie Brace, a 20-weeks-old baby born to Nick and Amy Brace in the UK, is in need of a heart transplant. She suffers from Noonan’s Syndrome and hypertrophic cardiomyopathy which essentially means that her heart needs to work extra heard to carry out basic functions including feeding.
She was born in London’s Evelina Children’s Hospital on May 10, 2016, and is currently being fed through a tube.
Her parents are calling out to people to sign a petition that makes the process of organ donation automatic. In most of the UK, people need to sign the organ donor register or inform their relatives if they wish to donate their organs. Nick and Amy are campaigning for the system in Wales to be followed wherein residents will have to expressly opt out.
While they support organ donation, they understand what it means to get a heart for their baby. “We’re relying on another child dying,” Nick was quoted as saying by The Independent. “That’s dreadful. We’re hoping for someone to die.”
Marnie’s parents moved to London from Eastbourne to stay close to the hospital with the right facilities for her, and are constantly besides her. “Both mum and dad take it in turns to remain at Marnie’s bedside at the London hospital. Meanwhile, the other parent returns to the accommodation to look after Marnie’s older brother, Jonah, who (is 21-months-old and) only recently joined the family in London after having been looked after by relatives back home in Eastbourne”, reads the Just Giving page set up by their friends to help and support the family by raising funds.
While they’re doing everything they can to save their little girl, they hope that the petition will help change the law. “We hope that we can use Marnie’s life to get the message across that the law needs to change, so we can stop other children and their parents going through this. Everybody you know is willing to give their organs, but the law doesn’t reflect that attitude”, Nick said, according to The Guardian.
Marnie’s parents are constantly lobbying for a change in the law and updating friends, family and people who’re sending their best wishes on a Facebook page by the name of the baby – Marnie Brace.
