Brothers show courage

Brothers Joshua and Samuel were never expected to sit up by themselves let alone run in a relay.

It wasn't pretty, but it was really beautiful when Sam Huck, 12, who has a neurological disorder called Joubert Syndrome, recently ran in a relay, representing Foothills elementary on the track at Masich Place Stadium.

Mom, Cheryll, was crying her eyes out as Sam's teammate passed the baton to him and then ran beside Sam, encouraging him through the race.

"To see Sam run - he's not like lightning although he thinks he is - he worked so hard and you can see how hard he has to work to run, I was very, very proud," said Cheryll. "When I looked back across the field there were not many dry eyes in the stands. It was amazing and a huge thank you needs to go to the teachers organizing the event and Sam's teammates who supported him."

The victory on the track was the culmination of a lot of years of overcoming obstacles, never giving up, always moving forward.

What was causing the symptoms in Cheryll's babies remained a mystery for years.

After a lot of genetic testing Josh, now a 14-year-old D.P. Todd student, was diagnosed at six months old with having cerebral palsy because he wasn't developing properly for his age.

But that wasn't it.

That was when Cheryll first heard her son wouldn't sit up, stand up, or walk like other boys.

"It was a pretty bleak outlook that the doctor gave us," said Cheryll, who was living in the States at the time. "I got pretty angry at the doctor and asked him 'how dare you?' I told him that our son would be walking one day and when he did we'd have a party." And they did - just before his fifth birthday.

At three years eight months old, Josh was accurately diagnosed with Joubert Syndrome. Brother Sam was just under a year old at that time.

"It's extremely rare," said Cheryll of the little-known disorder.

Joubert Syndrome is a neurological disorder where the cerebellar vermis is under-developed, a part of the brain that affects balance and coordination, and can cause conditions like abnormal eye movement, mental retardation and hypotonia, which is low muscle tone.

Both boys started walking just before their fifth birthdays.

They have the same type of Joubert Syndrome and Cheryll said that explains the similarities in their development.

"Both the boys are in taekwon-do and they went from kicking two inches off the ground to being able to kick up to their shoulders," said Cheryll. "For kids who have poor balance and coordination that's an extreme achievement. It's important for people who have kids with disabilities to know that there are sports organizations that will adapt their program for children with special needs. Parents just need to ask."

Cheryll held Josh back a year when he was in Grade 1 but it was more for developmental aspects.

"They both definitely operate at a younger level," said Cheryll, who builds mobile apps for industry for a living. "Samuel is probably a little more on par than Joshua but they both have adapted programs in school and are with their peers."

It wasn't easy having two growing children who couldn't walk until they were almost five years old.

"I had to start weightlifting to be able to carry them," said Cheryll, ever the planner. "My thought was that I had to be able to carry them both to safety if there was ever a fire. It was very physically challenging for me because I would have to carry them everywhere."

And pushing two wheelchairs at a time wasn't easy, either.

"I did learn to push two wheelchairs at the same time and it's been challenging," added Cheryll, who still has to help the boys when going upstairs. "It's just an automatic thing, I don't think about it any more."

When they first moved to town nine years ago, they lived in a three-storey townhouse.

"People thought I was crazy but that's how Sam learned to crawl," said single mom, Cheryll. "It was the first time he'd crawled and he was three-and-a-half so the stairs were used as a therapy tool."

Cheryll always encouraged the children to try.

"Kids fall down and they get back up," she said. "I think too many people further disable their children by doing too much for them."

When Cheryll was a young girl, she would always stand up for the underdog, encourage inclusion in school where special needs children were more segregated than they are today.

"There was a lot of teasing and kids getting picked on and I would always stand up for them so I guess I was preparing for this my whole life," she said. "I've always been able to handle it and no, no nursing background but believe me when I tell you I have all kinds of background now."

Cheryll is a determined mom trying to do the best for her children. She's writing a book to parents of children with a disability about how to get past the pity party and get on with life.

"My kids are two of the most amazing children you could ever encounter," said Cheryll.