The Liam Foundation
Welcome to the Liam Foundation. In June of 2019 Liam was diagnosed with mitochondrial disease, more specifically POLG disease, a genetic disorder that has caused balance and gross motor issues, epilepsy, and autism.
The doctors told us that this is a very rare disease and that there is no cure. We were told that life expectancy for Liam's condition is 3 months to 12 years.
As Liam's dad, I have made finding a cure my number one priority in life. I won't stop until a cure is found. I have met with doctors from Canada, USA, and England. After my visits with all these amazing doctors, it is apparent that research is needed.
I have created the Liam Foundation and have also teamed up with the Montreal Children's Foundation. Together we will raise funds for research and clinical trials.
Mitochondria are the “energy factory” of our body. Mitochondrial diseases are long-term, genetic, often inherited disorders that occur when mitochondria fail to produce enough energy for the body to function properly. One in 5000 individuals has a genetic mitochondrial disease.
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.
We are so grateful for your interest in Liam and his foundation. There are so many ways for you to help, and we truly appreciate each and every effort. By lending your support, you are helping us on our quest for a cure.
Make a Donation
Make a Donation to lend your support. It’s a great way to contribute to our cause, and every little bit counts towards funding research and finding a cure. Contact us for more details about how you can help.