Montreal Children's Hospital Foundation

In April of 2019, I was at home with Liam and noticed jerky movements that I thought might be a seizure. We rushed him to the Montreal Children’s Hospital, where they struggled to stop the seizures. He stayed in the hospital for over a month, experiencing daily seizures and running any and all tests they could think of.

In June of that year, genetic test results showed that Liam had a form of mitochondrial disease. Mitochondrial disease is made up of different disorders that affect the body’s mitochondria, which are tiny compartments in almost every cell of the body. What that means in layman’s terms is that some cells of the body do not have enough energy to function how they are supposed to. For some people, the mitochondria of the muscle cells are affected, and their movement and strength deteriorate over time. For others, the mitochondrial disorder may be present in their eyes and/or ears, progressing into blindness and deafness. For Liam, the mitochondrial disorder exists in his central nervous system. It results in developmental delays (autism), epilepsy, and ataxia (bad balance and coordination). When Liam was diagnosed, we were told his condition would worsen over time, and that he would lose his life to this disease within 10 years.

This news has crushed our family and it has changed the path of my life. There is no cure for mitochondrial disease and research is badly needed. I have become an advocate for mitochondrial disease and I have created the Liam Foundation. The aim of the foundation is to find a treatment or cure to save Liam’s life as well as the lives of other children living with this disease. The foundation is currently funding a medication trial at the Montreal Children’s Hospital for Liam and ten other children worldwide. The hope is that the medication will boost mitochondria levels in the body’s cells, and actually improve the kids’ abilities to function.

Another huge aim of the Liam Foundation is to create a dedicated mitochondrial disease research centre at the Montreal Children’s Hospital. It would be the first of its kind in Quebec. The funding would be done in partnership with the Montreal Children's Hospital Foundation. Covid19 has delayed the process, but in the meantime, I continue to raise funds in the hope that the centre will one day be a reality and that we can establish a team to help save Liam’s life, and the lives of other children.

Finally, the Liam Foundation also just wants to spread awareness of mitochondrial disease to get the help children like Liam need. The more people know how devastating this disease is, the more they may want to help. Please help us fight our fight and find a cure for this disease.

I love you my little Liam,

Dad XX

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