A MOTHER who made the heart-breaking decision to turn off her baby’s life support system has raised more than £1,000 in her memory.
Six-day-old Emily Anthony died after being diagnosed with Non-Ketotic Hyperglycinemia, a genetic condition which affects just one in 60,000 babies.
Her parents Rachael Fawcett and partner Karl Anthony of Adlard Road, Wheatley Hills, have raised £1,052 for the Neonatal unit at Doncaster Royal Infirmary, where Emily was born in November, and helped support hundreds of other people dealing with the condition around the globe through her facebook page.
Her fundraising has included a pram walk, street party and burlesque event and will be shared with Sheffield Children’s Hospital and CLIMB, a charity for Children Living with Inherited Metabolic Disease, who all helped the family during Emily’s short life.
The pair are vowing to support families impacted by the disease, which causes a sticky fluid to form around the brain, as well as raise global awareness.
Rachael, 30, said: I think Emily came to us for a reason, and I think that may be to help people through what we had to go through. We felt we had no one to turn to in terms of finding help. I hope we are helping provide that help.
“She has helped so many people. We share stories and we have members as far away as New Zealand.
“Me and my partner both carried the gene and that is why Emily was affected the way she was. We don’t know how many others out there carry it.
“The symptoms are refusing to feed, breathing problems and floppiness. I think there may be children who die from it who are not diagnosed.”