A NEW MEANING OF BITTERSWEET JANUARY 27, 2011 - 12 NOON

By Cam Tait Sat, Jan 29 2011

Lisa Lohin, Hali Harapchuk, Enna, and Enna's father, Hugo Duchaine.

On her way to an eight-year-old memorial service, Lisa Lohin she got a telephone call that brought joy to her family.
Bittersweet? Absolutely — and that how an incredible story of loss spun into endless possibilities Thursday for two-year-old Enna Lohin.
Enna has of Spinal Muscular Atrophy, a disease that effects the spine she is unable to sit up, speak and is on a ventilator. But her mind is sharp — sharp as a tack.
Enna was presented with an Intelligaze Eye Gaze , a computer which reads her retina. Simply by looking at an icon on the computer screen, Enna can now express herself.
But, originally, the Eye Gaze was intended for another girl with of Spinal Muscular Atrophy.
Sadly, Kaitlyn Pas passed away last week at age eight.
“I was on my way to Kaitlyn’s memorial service Monday when my spouse phoned to say Kaityn’s family wanted Enna to have the machine,” says Lisa.
“I just thought of Kaitlyn’s Mom and Dad and what they were going through — and how they still could think of helping others.”
The two families experience a close bond because of their children.
“Kaitlyn has been an advocate for herself, and now for us,” says Lisa.
“And now Enna can learn and get an education.”
Kaitlyn’s mother, Hali Harapchuk sat in the front row of the proceedings.
“We wanted to be here and represent Kaitlyn,” a very composed Harapchuk says.
“And I wanted to let people know how special she was.”

It was a few years ago when Harapchuk found out about the Eye Gaze.

The first trial machine didn’t work very well. But when another one arrived it gave Kaitlyn new independence.
“The first thing Kaitlyn said was watch television,” says Harapchuk .
Kaitlyn lost her battle due to complications caused from her disease.
“I’m so happy the computer went to a family we know, someone who has the same condition as Kaitlyn and someone local.”
The computer is $18,000 and doesn’t fall under government programs such as Aids to Daily Living.
The Variety Club of Northern Alberta and the Children’s Ability Fund partnered to purchase it.
“We always like to be there for kids who fall between the cracks,” says Don Clarke of the Variety Club.
Enna will be learning the new technology through the GRIT Program under the watchful eye of Amber Michaud.
“This was supposed to be Kaitlyn’s day,” her mother says with emotion.
In many ways it certainly was.

Family turns grief into a gift for toddler

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

A family turns their grief into a gift for a toddler with spinal muscular atrophy. Enna Lohin (right) will now be able to speak thanks to a special machine originally meant for Kaitlyn Harapchuk (left).

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 "A New Meaning of Bittersweet"	Thank you Kaitlyn, you will forever be with me	Click Here to Read "Family Turns Grief into Gift for Toddler"