Olivia Kay Borodychuk is not just a little girl from Dewitt, Michigan, she is a star of hope to many in this community.

Olivia was diagnosed with the rarest form of Leukodsytrophy called Alexander Disease. She is currently 5 years old and most kids who are diagnosed with the Infantile onset, have a life span of 5-7 years. Currently, there are only 200 published cases of Alexander Disease. Leukodystrophy is where the myelin sheath around the nerve bundles in the brain becomes compromised and nerve impulses do not function properly.

Most kids lose most of their ability to function and many suffer from symptoms such as seizures, muscle stiffness, spasticity, developmental delay, problems swallowing, difficulty eating, respiratory issues, and enlarged head size. Olivia was diagnosed at 2 years old after a year of testing to figure out what exactly was going on with her development and all the seizures she was having. Now, at 5 years old, she currently has to be positioned on her side in order for her to breath and manage her secretions. She is fed through a G-tube, gets constant suctioning and chest vesting. There is currently no cure for Alexander Disease.

Team Olivia Kay was established by Olivia’s parents Chad and Lisa.

We wanted to start a ministry where we could shed some light on what it is like raising a child with a terminal illness. As well as sharing Olivia’s story and spreading awareness about a disease the hardly anyone has heard of. Our goal is to tell at least one person a day about Olivia and her disease. And if we have done that, we have done our job! We like to get Olivia in front of people, it is a great way to teach others about the overcoming fear and showing people the daily challenges that a family goes through to give the appropriate care to a child that depends totally on you.

It’s a great way to share about rare diseases and how so many of them impact families in the world and how it is so important to establish that piece of awareness, because our hope is that the more people know about them, the more well known they can become and therefore, action can take place. In our community, Olivia is well known. She has become such an inspiration to many families, they see her and they want to do something. There is a walk in her honor every fall that brings the community together to discuss rare diseases and bring light to her story.

Every year, Team Olivia Kay sets up numerous presentations to groups, social clubs, and organizations in the community where we can go out and educate others about our journey. It is a great way to get the word out, but makes people think about what they can do to help with the cause as well as spread awareness. Olivia has impacted so many lives with her story and her medical journey. She has changed our life as parents and we just want to honor her and make it known that there are so many battles being fought by families who have kids with rare diseases.

We just want to be impactful. One day we want to make it a foundation because we want to pay it forward to others. So many families need help monetarily when they are going through a difficult time with a diagnosis for a child. We want to provide that support for meals, medical equipment and conference fees. We know how important it is to surround yourself with others that are going through the same thing you are. Our goal for the Olivia Kay Borodychuk Foundation is to touch lives, raise awareness and establish funds for research for a cure. Support, Advocate, Cure!!! This is our mission.

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