14-year-old boy gives voice to grandmother living with ALS in Arnprior
ARNPRIOR -- Arnprior resident Jeanette Grant was diagnosed with ALS around Christmas in 2019. Towards the end of the following summer, the disease had taken the 78-year-old’s voice.
"I was so scared because I didn’t know if I would fall over the next day or what," says Grant, recalling her emotions at the time of diagnosis.
"Christmas is an off time for people, so the support from professionals was limited."
It was a disease and symptom that hit her grandson Chase Reimer hard.
"When my Nana got diagnosed I was definitely very sad. Uncertain, I think we were all feeling."
Reimer has a close bond with his Nana, and searched for speech apps to try and give back her voice. Reimer could find nothing simple enough for his Nana to use, so the 14-year-old set out to create his own solution.
"Programming I started when I was a lot younger as a hobby, I went to a lot of camps," says Reimer, a grade nine student at South Carleton High School. "It certainly difficult because there wasn’t a lot out there. But I found some good (application programming interfaces) and I was able to really develop an app that works."
"I should say it didn’t really surprise me," says Cassandra Grant, Reimer's mother and Jeanette’s daughter. "He’s always been able to do things like that."
The app is a simple program Jeanette Grant can open up on her computer. The program contains a text box and a 'Speak' button. Grant types in what she wants to say, clicks 'speak', and the program speaks for her.
“I sound like a Wookiee from Star Wars if I am emotional or rushed so it really helps me," says Jeanette Grant, proving that even if ALS can steal her voice, it cannot take her sense of humour.
This isn’t the first mountain of adversity Grant has had to face. Aat the age of 39, Grant was diagnosed with breast cancer, a diagnosis she has since overcome.
Throughout her life, Cassandra has always described her mother as "go, go, go", and very active in the community. Grant even helped found a dragon boat team in Arnprior, entirely made up of breast cancer survivors.
"She’s a proud member of the red hatters, and she’s just full of life, has tea parties all the time," lauds Cassandra. "So it’s been a big challenge; first of all, with COVID, and then with ALS."
Despite ALS doing what it can to slow Grant down, it is only serving to strengthen the bond between Reimer and his Nana.
"It’s definitely a good feeling because I was making it for Nana. I knew I could help, and I made it to help her because I know she would do the same thing for me."
Reimer still tweaks the program for his Nana here and there, making it easier to use. He says maybe down the road he will offer his app to larger companies who can make the technology more accessible to those who experience speech loss.
But for now, her son’s invention is allowing more quality time between Cassandra and her mother.
"Well, we don’t know how long we have and every day is a gift. So that’s how we’re going to approach it."