'He's so special': 3-year old completes Forest City Fun Run with assist from walking device

With family and friends by his side, three-year old Colby Champ took off in his first Forest City Road Race.

“Colby was born with a neurological condition called Lissencephaly,” says Lindsay Marcaccio, Colby’s mom.

“It basically means that his brain is smooth instead of having all like the folds that you would normally see. It has obviously impacted his development.”

Unable to walk on his own, Colby uses a special device called a ‘Trexso.’

Colby Champ, 3, prepares to take part in the Forest City Fun Run in London, Ont. with assistance from a trexo device on Sunday, June 11, 2023 (Brent Lale/CTV News London

“It is a robot that assists my child with walking,” says Jason Champ, Colby’s dad.

“He gets strapped in here, and there's a seat for him. He's got leg attachments that connect to his legs and it will help him with walking.”

Jason and Lindsay say they are thankful for their support team. They were all at the race wearing ‘Colby’s Crew’ t-shirts. The crew is made up of grandparents, aunts, uncles, cousins and friends.

The funds raised from Sunday’s races benefit the Thames Valley Children’s Centre where Colby is a client.

“His wheelchair’s from there, so they made sure that he's super supported,” says Marcaccio.

“He has physiotherapy, occupational therapy, and speech therapy. They have helped him learn how to eat and chew and swallow so that he currently does not have a feeding tube. He can eat orally. So any funding from this race that goes towards that helps kids not just like him but others with a wide a range of disabilities.”

Jason Champ (front left) and Lindsay Marcaccio help their son Colby Champ, 3, finish the Forest City Fun Run at Victoria Park in London, Ont. on Sunday, June 11, 2023.(Brent Lale/CTV News London)

The condition is so rare it occurs in one-in 100,000 births, and life expectancy ranges from as young as two, to as old as 40.

“The main concern with kids with Lissencephaly, it causes epilepsy,” says Marcaccio.

“It can be fatal so managing his seizures is the most important part. Also making sure that he safely chews and swallows and doesn't aspirate on anything.”

Sunday was special for ‘Colby’s Crew’. It was also emotional as he crossed the finish line of the 700 metre race.

“It was something that we didn't know if he could do,” says Jason.

“He's doing a race and it's raising awareness, so it's an awesome thing.”