A little girl with a big imagination has a long list of goals and isn’t letting a rare progressive disease get in her way.
“I want to be a singer, an actor, a model, an author and maybe an architect, too,” said Afra in her brightly painted room.
The nine-year-old was born with Ullrich congenital muscular dystrophy, which affects her skeletal muscles.
“As she’s growing more and more, she’s getting weaker and weaker,” said her dad, Humayun Islam. “We try to help her, but it doesn’t help much because of the type of disease it is.”
Afra started to use a wheelchair when she was five years old. She can no longer stand and needs help with daily tasks such as taking a shower or getting into bed.
But there is support for Afra: a community worker with the Developmental Disabilities Resource Centre comes four times a week to help Afra and her family.
Hope Kobusingye started to work with Afra last year. Despite the age difference, the two have become fast friends.
“She’s such an intelligent, amazing young girl,” Kobusingye said. “She’s one of the most positive young people I’ve met.”
And when Afra is asked where all her positivity comes from, she has myriad reasons.
“Maybe because I have a lot of imaginary friends and I’m more bright?…And I’m really tough. Trust me, I am.”
And the DDRC also gives Afra’s parents a moment to take a breath when life piles up.
“We get a break from the daily tasks; we always do. Sometimes we need a break to get the groceries or stuff like that,” Islam said.
Afra has taken an unique approach on how to live with the debilitating disease. She’s taking control, spreading awareness by public speaking and on a smaller scale educating her friends and peers.
“By doing that a lot of kids in her school understand Deeba is in a wheelchair for a reason,” said Islam. “She’s trying to spread knowledge to the community.”
And while Afra’s parents take her illness day by day, hoping for a cure, they’re also focused on the lesson their young daughter is teaching them, one that will never be forgotten.
“I look at her and how positive she is and know we are blessed.”
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