Accessible housing needed for brothers with rare condition
CALGARY -- Spending more time at home during the pandemic is becoming increasingly more difficult for a Calgary family whose needs are changing due to a rare genetic disorder.
Two of the Basaraba children have Friedreich’s ataxia, a degenerative neuromuscular disorder with no cure.
At 17, Mikail Basaraba can no longer walk without falling and though his doctor said he needed to use a wheelchair all of the time, it’s not always possible in the bungalow the family is renting.
“It’s hard to get through the doorways, and if it’s on a bad day I will have dad come and either carry me or piggyback,” said Mikail.
His brother, Emerson, has the condition too.
At this point, the 13-year-old only needs his wheelchair once in a while, but his condition has already affected some things he had planned for the near future.
“I really wanted to drive, but the doctors say I can’t do that because of reflexes,” said Emerson.
The condition worsens over time and also affects vision, hearing, and swallowing.
Their parents have their own arborist business to support the boys and their younger sister, who does not have the condition.
As the family faces growing medical expenses, they are also trying to save up to buy or build an accessible home.
“When they get to the point where they can’t get out of bed themselves, we’re going to need lifts and stuff like that,” said their father, Toby Basaraba.
Working to cover the increasing costs means less time to enjoy moments together.
“We don’t get to see them as much and don’t have as much family time,” said Emerson.
The Basaraba’s have started a fundraising campaign to try and reach their goal sooner.
“So we can spend quality time with our kids,” said Melissa Basaraba.
“Ours have shortened lifespans, so it’s really hard to be burning the candle at both ends and then trying to make memories at the same time.”
More information on Friedreich’s ataxia can be found online.