News Online: Family turns grief into a gift

Published online at on January 27, 2011.

Linda Hoang, Global News: Thursday, January 27, 2011

Family turns grief into a gift

When Kaitlyn Harapchuk was three months old, she was diagnosed with spinal muscular atrophy, a disease that affects muscle movement.

Doctors told Kaitlyn’s mother Hali that she probably wouldn’t live to be a year old. But Hali wouldn’t accept it.

“There’s always miracles,” she said.

Hali found special doctors and support groups that could help her daughter live well past the one year benchmark she had originally been given.

Kaitlyn was also set to receive an Intelligaze Eyegaze unit on Thursday that would give her a voice she didn’t have because of her spinal muscular atrophy.

The unit is a communication tool that uses a person’s eye movements to form sentences by looking at specific pictures, speaking on the users’ behalf.

But Kaitlyn, who had beaten the odds and lived to be eight years old, died earlier this month, just one week before she was set to get the new Intelligaze system that would have allowed her to speak, play games, control household appliances, and even surf the Internet.

In the days since she died, Kaitlyn’s family decided to give the costly machine to another family who has a daughter – Enna – with the same condition as Kaitlyn.

“It’s happy that we know who it’s going to and that it’s going to help someone else,” Hali said on Thursday. “Enna’s family is going to hopefully hear her voice like we were hoping so badly to hear Kaitlyn’s.”

Two-year-old Enna currently can’t move or speak. She requires round-the-clock care and a number of machines to help her breathe.

Enna will officially receive the Intelligaze system in February but she’s already tested out the equipment and there have been meaningful results — Enna was able to tell her parents that her favourite colour is purple.

“We are very grateful for this device,” said Enna’s mom Lisa Lohin. “It’s a huge achievement for her to have independance that she’s never had before.”

The device was purchased and set up thanks to help by the Children’s Ability Fund and the Variety Club, a children’s charity.

Kaitlyn’s family is glad that although the device can’t help her Kaitlyn, it will help another child in need.

“In her death she’s still helping people,” Hali said. “She’s a pretty powerful kid and we miss her.”

And Enna’s family are now looking forward to the brighter future their daughter will have thanks to the Harapchuk family.

“She’s able to have her childhood, her education, her communication, and her independence,” Lisa said.

With files from Laurel Clark

Click here to read the article on the Global Edmonton website.

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