A nine-year-old boy who has already had four open heart surgeries is in line to get a new “super” one.
Toby Daws was diagnosed with DiGeorge Syndrome at birth.
The condition affects about one in 4,000 children.
It can be fatal but some sufferers live normal lives.
Brave Toby had his first surgery at just seven-days-old to repair structural issues in the heart.
He also spent the first eight weeks of his life in hospital.
He had his fourth surgery last month where his aortic valve was replaced with his pulmonary valve as a last attempt to save his heart.
If the functioning of his heart doesn’t improve then doctors will be forced to resort to a transplant which his parents have dubbed his “super heart.”
Mum Nicole Fallon, 30, and dad, Wayne Daws, 30, have prepared ‘brave’ Toby for the surgery by telling him if it failed he would get it.
DiGeorge Syndrome is caused by a small missing piece of the 22nd chromosome.
It can affect many parts of the body and cause heart abnormalities, an impaired immune system and developmental delays.
Clinical researcher Nicole, of Blackpool said that even though the surgery “couldn’t have gone better” they won’t know if it’s worked for another six months.
Nicole said: “He was born with a genetic condition that has caused health issues.
“His heart wasn’t formed properly.
“The surgery couldn’t have gone better.
“Everyone is really impressed with how quickly he’s recovered.
“There’s been an improvement but if it doesn’t improve fully then he will need a heart transplant.
“We thought a heart transplant was the only option so having another chance is amazing.
“We’re positive that it will work.
“If he does need one then there’s no way around it but we’ll cross that bridge if it comes to it.
“If it works it could be his last surgery.”
Toby has had ten surgeries in his life.
Each of his four open heart surgeries took a minimum of six hours.
Nicole said: “He’s probably spend six to eight months of his life in hospital.
“It’s horrendous for me, his dad and the rest of the family when he’s in there but we’re used to it.
“We prepare for it and we have to be positive in front of Toby at all times.
“It’s been a breeze for Toby.
“He’s so brave and so positive.
“We’ve told him that he’s going to get a super heart so when he comes out of surgery he asks if he’s got his super heart yet.”
Nicole worries that if Toby does need the transplant they’ll have to wait over a year for a donor match.
She said: “There’s a level of urgency and there are 39 kids on the urgent list.
“It’s important to raise awareness because it’s harder for children to get a transplant.
“Children aren’t automatically enrolled onto the donor list.
“It’s not always in parents’ minds what they would do if the worst happened.
A family friend is running the Morecambe half marathon to raise money for charity, Chuf, who support children and families who receive treatment at the Children’s Heart Unit based at hospitals providing care for cardiac patients throughout the North of England.
Nicole said: “They support families and children in hospital.
To donate, go to: www.justgiving.com
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