Alex Whitford’s favourite Ninja Turtle is Raphael. He’s the red one. And if you ask, Alex will tell you all about “Raph.” That is perfect for me, because “Raph” is my favourite ninja turtle too. I don’t think he believes me, though.
Alex uses the couch inside his grandma’s basement suite to show me how one time Raphael got pinned up against a wall by weapons. Then he shows me how he got free.
“Raph had more swords,” Alex says. “He pulled them from the back of his shell.”
I can perfectly picture the move because just like Alex, I was five years old once too. I still don’t think he believes me though.
But the thing is, in some ways, Alex and I are closer in age than we look. I’m 30 and his body thinks he’s 40.
Alex has a rare genetic disorder called progeria. Progeria causes kids to age about eight times faster than normal. It affects one in every 20 million people and Alex may be the only kid in Canada who has it.
“When he was two months old is when I went over to his parents place and noticed his legs were stiff and bumpy,” says his grandma, Dory Whitford.
Months later, Alex was officially diagnosed. He’s been living with Dory basically since then.
“He has his aches, his pains in his legs. If he runs or plays too hard he has sore knees,” Dory says. “He goes every six months to get his heart checked.”
READ MORE: ‘Forever in my heart’: Ontario man with rare aging disorder dies at 20
The heart is the real problem with progeria. Children who are diagnosed are predisposed to heart disease. In fact, it almost always kills them. Alex isn’t expected to live beyond the age of 13.
“I don’t want to think about that,” Dory says.
“I want to enjoy what I have now and give him the best love… that’s my biggest concern – that he’s a happy little boy and he enjoys life.”
As Dory says this, Alex jumps around on the couch behind her, demanding her attention before showing her a ninja kick. It’s pretty clear he is enjoying life with the zest that a five-year-old should.
But he does look different. He’s very small, tiny even. You can see veins in his head, which is covered by almost no hair.
“Some people just stare, other people will come up (to me),” Dory says. “I want people to know how rare this is and what he goes through.”
For his part, Alex rarely says anything about being different. He’s likely going to have to explain it more when he starts Grade 1 in the fall.
“He is very intelligent. Very smart,” Dory says. “I just tell him some people are just tiny and full of love.”
By the end of the interview, Alex has invited me to play mini-sticks in the tiny space between the couch and the TV. He’s the “orange guys” because they’re the best at hockey. After every goal, he jumps to give me a high five. Tiny and full of love.
“You’re good at hockey,” I say.
“You’re not,” he replies. Tiny and full of truth too.
Alex didn’t ask why Raphael is my favourite Ninja Turtle, but I’d like to tell you. Raphael is my favourite Ninja Turtle because he’s different. Even different compared to the rest of the group. He walks his own path and he doesn’t apologize for it. But when things get tough, he finds strength in his friends and family.
Alex didn’t ask. I have a feeling it’s because he already knows.
A fundraiser for Alex will be held Saturday, April 1, 2017 at 10620 205 St. in Edmonton. It runs from 4 p.m. to 8 p.m. and will have a silent auction and wing-eating contest. All proceeds go to a trust fund in Alex’s name.
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