Rare Disease Patient’s Parents Sew Positioning Pillows for Sick Kids at Children’s Hospitals
March 1, 2016
Olivia Borodychuk of Dewitt Michigan is a 7-year-old little girl who battles a condition called Alexander Disease orl Leukodystrophy. Leukodystrophy refers to progressive degeneration of the white matter of the brain due to imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers. Alexander Disease is the rarest of 40 forms of Leukodystrophy and there are currently only 500 published cases.
She was diagnosed at two years and was told that the average life span is 5-7 years. Olivia became medically fragile quickly as her disease progressed and she became bedridden and only could lay in a a sidelying poisition at all times. At the age of 4, her mother Lisa just learned to sew and started making her little pillows that she could use to give Olivia comfort as well to accomodate her tubing and wires that she has from multiple pieces of equipent. This went on for a few years, providing these pillows for Olivia and then in 2015, Chad and Lisa created the Olivia Kay Foundation (a 501c(3) non-profit that helps improve the quality of life for children and families living with severe multiple impairments and terminal illnesses.
One of the projects that they focus on is the Olivia Kay Positioning Pillow. These pillows were so well received while Olivia would have her short and long stays in the hospital that she often got many compliments from nurses, staff and doctors about how helpful the pillows were. Her mom and dad decided to start providing these pillows at their local hospital so that the nurses could give these pillows to kids who needed them either for comfort or for support. These pillows became very popular in a very short period of time, until the foundation started reaching out to other hospitals to see if there was a need for them as well.
They are now providing loads and loads of pillows to all sick children at Children’s Hospitals in the State of Michigan. Each pillow is sewn by Olivia’s mother and her and Chad prepare the pillows in a clean and sanitary environment where they are tagged and then packed in a plastic bag so that they can go to a child clean and sanitary. The neat thing about each pillow is that there are no standard sizes. They are sewn in all different sizes and colorful fabrics that are tailored towards kids. Kids love them. Nurses love them because there are many ventilator kids who need a smaller sized pillow just to give that tubing a little prop or to act as a barrier between the skin.
The feedback from the hospitals is that there has been a huge need for these and they are providing a much needed benefit to Pediatric units and ICU’s. The “Pillow Project” was then broadcasted on three television stations in Michigan and then NBC News got a hold of it and it was broadcasted all over the United States on several state television stations. It has been a great tool to not only lift the spirits of a child in the hospital, but to also spread awareness about this rare disease that no one has ever heard of.
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