Lisa Borodychuk Of the Olivia Kay Foundation
What is your job and job title?
I am the co-founder and vice president of the Olivia Kay Foundation headquartered in DeWitt.
Are you full time at the Olivia Kay Foundation?
My hours are dependent on the needs of the foundation, the children and the families. The foundation runs on 100% volunteers, so there are times when I do work a full-time schedule to keep up with the demands of our Pillow Project deliveries, basic administrative tasks and other mission-related tasks. I do not get paid for my hours because we are a nonprofit organization.
What does the Olivia Kay Foundation do?
My husband, Chad, and I created the foundation as a 501(c)(3) nonprofit so that we could help children who are living with severe multiple impairments and terminal illnesses from any disease to live a better quality life. The foundation’s mission is to support those children and their families by walking alongside them on their journey.
The Olivia Kay Foundation can help in many ways including providing information about living with severe multiple impairments; connecting families with appropriate resources for obtaining medical equipment or suitable transportation; providing financial gifts to support practical needs, such as gas cards to get to medical appointments; helping with respite care or provide caregivers with much-needed breaks; funding/organizing improvements for wheelchair accessibility; offering support groups; and other things.
Your daughter is the inspiration behind the foundation. Can you tell us about her?
In her short number of years here, our daughter, Olivia, inspired so many people, and we wanted to create an organization to honor her. I am so thankful that I got to be her mom. Olivia’s legacy will live on; we will always do what we can to help children who are living with illness. Olivia fought a hard battle against Alexander disease leukodystrophy for eight years.
Doctors diagnosed her with this rare neurodegenerative disease at 2, and my husband and I were told she would only live for about a year. We were so blessed to be able to have eight years with her. She taught us so much in her short life. She endured pain that I don’t think many adults would have been able to handle.
Olivia never had the opportunity to talk, walk, crawl or eat. She suffered daily with seizures and had a G-tube (gastronomy tube) at the end of her life. She becane side-lying and bedridden, and then relied on airways clearance systems and BiPAP ventilation to assist her with her breathing. I watched her health decline slowly through the years — and as you can imagine, it is heartbreaking. No parent should ever have to endure the loss of a child. And we built a handicap-accessible home, which later turned into a pediatric intensive-care-type environment to support our daughter’s care needs.
Olivia taught us to look beyond ourselves, how to receive for the good of others, how to turn anger and hurt into good works, how to bring people together from all walks of life to do the common good, how to be hold, and how to live a life full of grace and forgiveness on a daily basis. All of these life lessons came from our beautiful 8-year-old little girl who never spoke a word and who positively impacted our nation with her journey living with a terminal neurological disporder. In fact, this is what is inscribed on her headstone after she passed away in April 2017.
How did you transform the tragedy of losing your daughter into a mission to comfort others?
We started the foundation because, as parents to a sick child, we knew the feeling of being lost and hopeless. As a mother, you never expect to outlive your first-born child. I had a hard time coming to terms with it at first. I was depressed, bitter, angry, heartbroken and lost. Knowing our child was going to die, we tried very hard to work together as a team and to be positive to continue to help Olivia.
We were raising money for an out-of-state- organization for a couple of years and realized that, with all of the hard work and effort going into it, we could have been doing something here locally to help children fighting illness here in the Greater Lansing community. Because we saw the value of meeting families who were going through similar circumstances, our goal was to create a platform to not only spread awareness for
Olivia’s disease, but give these children and their families help and hope.
The challenges of raising a child with a severe illness can be so difficult in many ways, we wanted to make sure that we could do everything possible to help to pour into others and share our story with how we were able to get through our journey with our daughter.
What is the Pillow Project?
When we started our nationally known Pillow Project, we had no idea how valuable and impactful that would become. Pillows that we created at home for Olivia to help give her comfort and support while lying in bed would soon turn into a global initiative to help children who are admitted into hospitals and homebound children across the country and into Canada.
Since the inception of the Olivia Kay Foundation, the #pillowproject has been recognized by People Magazine and NBC news. The foundation just reached a big milestone of reaching 10,000 handmade pillows that have been donated to children.
All pillows are delivered and donated free of charge to 16 hospitals across Michigan and six hospitals in the states of Tennessee, Pennsylvania, New York, Minnesota, California and Georgia. They are all taking pillows on a regular basis to give to their little patients who are admitted at their facilities.