Olivia was born on October 10, 2008 to Chad and Lisa Borodychuk. She was a healthy 8 pound beautiful baby girl.There were so many things to learn about having a newborn at home. Around 8 months, Chad and Lisa noticed some slight concerns. They were brought to the attention of the pediatrician at that time but they didn’t seem to think they were major issues.
At the age of 10 months, Olivia was at home with Lisa and she had her first grand mal seizure. While being treated at Sparrow Regional hospital in Lansing Michigan, she had really puzzled the doctors as to why she was having seizures. This was a very scary time for Chad and Lisa. Olivia was referred on to a neurologist in the area. He has some predictions to what may be happening with Olivia, but he wanted her to be seen by a couple clinics out of state.
Chad and Lisa had taken Olivia to the Cleveland Clinic in Ohio to be evaluated for a week long EEG. At that time, she had seen a Metabolics and Genetics Specialist who had taken some urine and blood samples from Olivia to send to a lab in California.
In December of 2010, Olivia would have been two, Lisa received a phone call from the doctor in Cleveland to inform her that Olivia’s blood testing came back positive with Alexander Disease. She then preceded to ask what could be done. The doctor informed her that there is no cure and currently at this time he could not say how long Olivia would be with us. Lisa had to inform Chad that day. It was a very sad day for both of them.
AXD is a form of Leukodystrophy(myelin around the nerve bundles in the brain are compromised). There are 40 forms of Leukodystrophy and Alexander’s is the rarest form. At that point when Olivia was diagnosed, she was able to sit up, make vocal sounds, play with toys and still eat by spoon. She could smile and giggle. She still was having seizures and the doctors put her on some really strong medication. The medication caused her to become ill and started vomiting. She lost interest in eating orally and then in May 2010, she had a gastronomy tube placed in her stomach. From this point, Chad and Lisa watched Olivia slowly lose normal brain functions and her ability to do normal things.
Most children with Alexander Disease have an average life span of 7-10 years. Olivia spent most of her years immobile, only able to lay on her side to be able to manage secretions better so she would not aspirate. It was difficult for her to swallow causing the need to be suctioned quite frequently. She had a very extensive respiratory routine to maintain her airway and keep it clear. Olivia needed a feeding pump in order to be fed. She was on a large number of medications for everything from seizures, managing secretions, Gastrointestinal help, and and the list goes on. She needed braces for her hands and had to be turned and repositioned every two hours. There is currently no cure for Alexander Disease. Olivia went home to be with the Lord on April 28th, 2017. She was 8 years old. In her short number of years here, Olivia inspired so many wonderful things including the Olivia Kay Foundation. Olivia’s legacy will live on, helping children with severe multiple impairments and supporting research for diseases like Alexander Disease.