The Liam Foundation

Liam's Journey

When Liam was 4 years old, he was diagnosed with ASD (Autism Spectrum Disorder). At that time, Liam was only able to say 30 or so words and always had trouble walking. This was only the beginning of a crazy, emotional journey. When Liam turned 5, we noticed that his walking ability was getting worse and he would often fall. One evening in April of 2019, Liam had another fall, but this one felt different. Liam's legs would jerk and it looked like he was thrown to the ground. That evening around midnight, Liam started to have seizures. Liam was rushed to the Montreal Children's Hospital where he would stay for over a month. During this month-long visit to the hospital, Liam had seizures daily for hours at a time. There were countless blood tests, EEG's and medications given to Liam. The doctors were baffled and thought he might just have epilepsy. After Liam was finally stable and the seizures under control, we were able to go home. Unfortunately, this nightmare was not over. A few weeks later, Liam had more seizures landing him back in the hospital. It was then that we were told the results of his genetic testing: Liam had a POLG disorder, a form of mitochondrial disease that is progressive and ultimately fatal. We were told that we should enjoy the time we had left with him. The doctors thought Liam had days, weeks to live, that a rapid progression of the disease had likely begun and that he would get worse, and would certainly not get any better. Liam could no longer talk or walk and he was very weak. Liam would not have it and to the surprise of the doctors we were back out of the hospital two weeks later. Just four weeks later, and with the seizures now under control, Liam started trying to walk again, but never regained his ability to speak. Liam takes a cocktail of medication and vitamins and has not had another seizure since 2019. Liam, now 7, goes to therapy four times a week to work on walking and speech. He is stable, but we are walking on eggshells daily, never knowing what tomorrow will bring. There is no cure for mitochondrial disease and life expectancy is short. Please join Liam on his journey and help spread awareness of this nasty disease.