- Associated Press - Monday, February 29, 2016

DEWITT, Mich. (AP) - Chad and Lisa Borodychuk know about the challenges faced by parents of children with severe impairments or a terminal illness.

Their 7-year-old daughter, Olivia, has Alexander Disease, a rare disorder of the nervous system that breaks down a covering in the brain, which insulates nerve fibers and promotes the transmission of nerve impulses. The disease is incurable and children who have it usually succumb to the disease between ages 7 and 10.

“We have gone through so much that we wanted to pay it forward for other families in similar situations,” Lisa Borodychuk said. “We had seen so many broken families with financial burdens of caring for a child with a severe illness that we want to help these families.”

To help those families, the Borodychuks formed the Olivia Kay Foundation in 2014. Their goal is to provide support, the Lansing State Journal (https://on.lsj.com/1KskzQ9 ) reported.

“If we become aware of a child with a severe illness we will try to take them a toy or stuffed animal. We also will try to connect families with different resources that are available such as medical equipment,” Borodychuk said.

Borodychuk said the foundation has also provided gasoline cards to help cover the costs of traveling to doctor appointments and has provided movie passes and restaurant gift cards to the parents to give them some time together outside of the house.

“Once we receive more funds we want to do more in the way of home improvements, such as building a wheelchair ramp,” Borodychuk said. “We would also like to help families with purchasing vans that can support wheelchairs because those can be expensive.”

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The Borodychuks are also helping families by donating handmade pillows to hospitals around the state. The pillows are given to children who are patients at the hospital.

The idea for the pillow project came to Lisa when she brought pillows to Sparrow Hospital when Olivia was in the children’s intensive care unit last August.

“Olivia cannot breathe if she is sitting up so she had to lay on her side,” Borodychuk said. “If you are doing that all the time, you have problems with your skin. So I started making pillows to go between her legs as well as her back and head to help support her.”

Kelli Kilmon, a registered nurse in Sparrow’s pediatric ICU, thought the pillows were a wonderful idea.

“I told Lisa when she first brought the pillows in for Olivia that they were so amazing that I would like to give one to every child,” Kilmon said. “Lisa said that they were working on doing that through the foundation. This is something that just makes that child’s day.”

So Lisa, with the help of her mother Connie Jennings, made 30 more pillows and donated them to the hospital.

“I started thinking about other hospitals around the state,” Borodychuk said. “Olivia had spent some time at Mott Children’s Hospital in Ann Arbor so I called them to see if they would like some pillows and they said yes.”

In addition to Sparrow and Mott, the foundation has also provided pillows to the Helen DeVos Children’s Hospital in Grand Rapids, Bronson Children’s Hospital in Kalamazoo, Hurley Medical Center in Flint, Munson Medical in Traverse City and the Beaumont Children’s Hospital network in Detroit.

“We took 100 pillows to each hospital to hand out to every child,” Borodychuk said. “It is exciting because we are helping so many kids. And for those like Olivia, a need is being filled. That alone is really exciting.”

Lisa Gates, child life specialist at Munson Medical Center said the pillows are well received.

“My job is to help the children be comfortable and make their stay feel normal and these pillows are something that brighten their room and their stay,” Gates said. “Plus they are excited to learn that they can take them home.”

Gates said the parents also appreciate their children receiving the pillows.

“I think they appreciate knowing that people are thinking of them and trying to make their child’s stay more comfortable,” Gates said.

Kilmon said the pillows serve multiple purposes.

“For the children who are chronically ill they help with such things as supporting their head and back and turning the child,” Kilmon said. “Plus, it is something fun for other children. They get to pick out a pillow that they like and it is something that brightens their day and makes them happy. It helps them make them feel more at home.

“It is something that makes their visit to the hospital for of a positive than a negative.”

The pillows are made in the Borodychuks’ basement. Lisa and her mother handle the sewing operation while Chad and family friends help with filling the pillows. Material to make the pillows comes from donations.

“We made boxes to collect fill material as well as cloth to make the pillows and set them in area businesses that would have them,” Borodychuk said. “Some of the schools in DeWitt will also collect material to donate. We also have a number of quilters who donate their leftover material.”

Borodychuk said about 600 pillows have been made and donated since October. Their goal for 2016 is to donate at least 1,500 pillows.

“We want to supply all of the children’s hospitals in Michigan if they want them,” Borodychuk said.

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The foundation also hosts an annual leukodystrophy awareness walk in Olivia’s honor. The walk is held in DeWitt’s Riverside Park and covers from one to two miles. The event also includes food, music and raffle prizes.

“We try to incorporate an educational piece into the event so that it becomes and informational event for kids and adults,” Borodychuk said.

This year’s walk is scheduled for Sept. 24.

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Information from: Lansing State Journal, https://www.lansingstatejournal.com


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