A child who was handed a “death sentence” diagnosis is defying the odds and thriving, according to his proud parents.
Deccan Gill may look like any other healthy little boy, but five years ago he was diagnosed with Duchenne muscular dystrophy (DMD) – a genetic disorder which causes progressive muscle weakness.
The eight-year-old’s family was told he may not live to see his teenage years due to the condition, which is one of the most severe forms of muscular dystrophy.
Despite the devastating prognosis, Deccan’s parents, Manny, 46, and Reena, 45, have shared how the young boy is making every moment count and continuing to flourish.
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He has even managed to become something of an ice hockey star – at the same age doctors predicted he may need a wheelchair.
While he is continuing to beat the odds, his diagnosis initially hit the family like a ton of bricks.
“We were completely broken – they had just given our son a death sentence,” Manny, a sales specialist from Ontario, Canada, told Need To Know.
“They told us he could have trouble standing and walking by the age of six and might need to use a wheelchair.
“They also said it would get worse as he got older and he might not live past the age of 12.
“My world ended.
“I felt as if I would never smile again.
“I felt so helpless that I could do nothing for my beautiful little boy.
“He’s my child, the person I am supposed to be there to protect, and I can do nothing but watch him deteriorate before my eyes.
“So many things ran through my head like – what type of life will he have? Will he have friends? What will he do?
“I was totally broken.”
Their concerns started when they noticed the tot was small for his age when he was three, and he underwent some medical testing to check all was well.
Manny said: “I thought it was just routine as we didn’t notice anything that made us believe anything was wrong.
“He was toilet trained at 18 months, he was walking and talking at one, so he was never really behind on any milestones. If anything, we always felt he was a little ahead.
“We had no real concerns.
“But it was after those tests that they informed us Deccan had DMD.”
Receiving news like this is every parent’s worst nightmare.
Deccan’s parents immediately took to social media to connect with other families who could understand what they were going through.
Manny said: “The more we heard from other families, the more we understood that every journey was a little unique.
“Some people with DMD do live into their 20s and 30s. It didn’t have to be exactly as we were first told.
“I kind of took it as, ‘he has a couple of years to be active and play, so let’s make the most of it’.
“That’s exactly what we did and continue to do.
“We treat every day as a gift and we make the most of it.”
During the pandemic, Manny and Reena bought Deccan a pair of rollerblades because he’d always loved and wanted to play hockey.
Incredibly, the child has progressed to become an ice hockey “phenomenon” despite his condition.
His dad said: “I never actually thought he would be able to skate and I definitely didn’t think he’d be able to skate on ice.
“I just thought, let’s let him try his best and have fun. Whatever he can do is fine.
“To my surprise, he got quite good on them. This transferred onto the ice and I joined him up for a local hockey league.
“Since then, he’s only improved. He’s pretty much like every other kid.
“He has such a passion and love for the game that I can’t help being moved when I watch him play.”
Deccan is now defying all odds and progressing like any other child without DMD.
Having check-ups with doctors every six months, his parents say the medics are “always surprised by how well he is doing”.
Manny added: “I am proud of everything he does.
“Nobody can be sure how long this will last but we are just enjoying every moment.”
His family have raised over $300,000 (around £256,000) for muscular dystrophy charities, sharing Deccan’s story on social media to help raise awareness.
His dad added: “What I would want other parents to know is that you honestly never know what will happen.
“Try to make every moment count and make happy memories with your kids.
“Nothing is promised.”
