Three-and-a-half-year-old Gemma was born with a rare congenital neuromuscular disorder.
After spending almost a year in the hospital, she’s been doing remarkably well.
“The doctors have been very impressed by her, because she’s been making a lot of progress and she is not really having the typical path that children with neuromuscular conditions have,” says Gemma’s mom Amanda Bostik. “Usually they are quite progressive, but she’s been gaining strength.”
Bostik says doctors had their reservations about Gemma’s cognitive ability, but she is defying the odds.
“She’s gone extremely far in the last couple of years, so she is attending pre-school and operates an iPad. She knows her whole alphabet: numbers, letters, shapes, animals – cognitively she has caught up pretty much to her age group.”
But Gemma still has very complex medical needs.
She had tracheotomy and is dependent on a ventilator to help her breathe. She is also in a specialized wheelchair.
A year after Gemma came back from the hospital, her parents decided to try music therapy to see how their daughter would respond, and the results have been promising.
“She has picked up rhythm, and learned a lot through therapy,” says Bostik. “She is a child that we never knew would verbalize, and she is making sounds now. She is starting to communicate and use sign language.”
Bostik says her daughter gets really excited about the lessons.
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“She is really engaged and it’s really helped her learn how to communicate what she wants and what she does not want.”
Bostik says music therapy can be very beneficial for children with special needs, but costs add up overtime.
And after paying out of their pocket for the lessons, the family has turned to the CKNW Orphans’ Fund for help.
So far, the fund has funded $1620 worth of music therapy for Gemma.
“We have not had to ask them for anything ourselves,” says Bostik. “It is nice for people to know about organizations like this. There are a lot of families out there that need support.”
Bostik says the fund has also paid $5000 towards purchasing equipment for an accessible playground in Richmond, where Gemma can play with other kids.
The CKNW Orphans’ Fund is dedicated “to promoting the health and welfare of physically, mentally and socially challenged, as well as those children in B.C. who have been orphaned from society.”
The organization gives the money directly to the third party, and not to the family.
The CKNW Orphans’ Fund is holding their annual pledge day today. Donations can be made here.
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