Having a child with albinism came as a great shock to a Red Deer native.
Carrie Lentz and husband Philip learned their second son, Jonah, had albinism 12 hours after he was born on Feb. 22, 2010. The couple, both dark-haired, already had another son Jaxon, who is four-and-a-half.
The genetic disorder affects one in 25,000 births.
“He has white blond hair — he has zero pigment in his body,” said Lentz, who held a fundraiser at Red Deer’s Heritage Lanes bowling alley on Saturday on behalf of the Canadian wing of the National Organization for Albinism and Hypopigmentation (NOAH).
A nurse diagnosed the baby and not the pediatrician, who had never seen such a case before. Staff had been trying to look in the baby’s eyes.
“His eyes are translucent, so that’s how they diagnosed him,” said Lentz, who now lives in Chestermere.
“For us, we were fortunate he was only 12 hours old. But for a blond-haired family, you wouldn’t know necessarily.”
She is aware of only four Alberta families who have a child with albinism.
Most people with albinism are legally blind, said Lentz.
Fortunately, Jonah’s “low vision” is a lot better than many with this disorder.
It’s around 20/80 whereas someone with albinism can have vision that’s 20/800.
Jonah must wear sunscreen if he’s going to be outside for any longer than 10 minutes.
He has no developmental or behavioural issues, Lentz said.
Lentz, said the organization will increase public awareness about the genetic disorder.
Many people think it’s OK to describe a child like hers as an “albino.” It’s not, Lentz said.
“People come up to us all the time when we’re out and say ‘oh my God! Is he an albino?’” Lentz said.
“That’s the only word I knew before we had him.”
Lentz said she’s even challenged Earl’s Restaurant that serves its signature “Albino Rhino” beer but so far, the chain continues to keep the name of the pale ale. “I see myself as an advocate,” she said.
Lentz founded Canada’s NOAH in September after approaching the parent organization in the United States.
NOAH Canada wants to develop support programs for people with little or no skin, eye or hair colour or those who lose skin colour.
It’s also important to develop more awareness in the medical community, said Lentz, whose son has already visited 10 different specialists.
Lentz said the bowl-athon turned out great, thanks in part to the great venue provided at Heritage Lanes.
The event raised $6,500, far above the goal of $2,500. The money will be used towards the group acquiring charitable status as well as receiving Canadian National Institute for the Blind (CNIB) materials.
About 50 people attended. Jonah was the only child with albinism who took part.
ltester@www.reddeeradvocate.com