Little Steps But Always Forward has become a big deal.

“What started as a journey to save the life of my son Liam has evolved into something much larger than any of us expected,” shares Kevin Reason over the phone from his home in Montreal, Quebec.

“So many people have gotten involved – from Hollywood celebrities, sports stars, and politicians to local folks here who have really taken to Liam’s story and want to make a difference any way they can. We have had all sorts of fundraisers over the past couple of years, including golf tournaments, bike rides, concerts, comedy shows…most of my weekends are taken up with Liam Foundation activities and appearances.”

Liam, who recently celebrated his 11th birthday, was diagnosed with Mitochondrial disease (Mito) at the age of 5.

By definition, Mitochondrial disease is “a group of disorders that affect the mitochondria, which are tiny compartments that are present in almost every cell of the body. The mitochondria’s main function is to produce energy. More mitochondria are needed to make more energy, particularly in high-energy demand organs such as the heart, muscles, and brain. When the number or function of mitochondria in the cell are disrupted, less energy is produced and organ dysfunction results. Depending on which cells within the body have disrupted mitochondria, different symptoms may occur. Mitochondrial disease can cause a vast array of health concerns, including fatigue, weakness, metabolic strokes, seizures, cardiomyopathy, arrhythmias, developmental or cognitive disabilities, diabetes mellitus, impairment of hearing, vision, growth, liver, gastrointestinal, or kidney function, and more. These symptoms can present at any age from infancy up until late adulthood.”

Liam was the first child with Mito in North America to try experimental drugs from Europe.

“There have been some big changes since he started taking them – things like making eye contact, trying to speak, walking better, being more aware of his surroundings.

“So, the medication is working, although we are aware that it is just buying us time until a cure can be found.”

Already a father of four, Reason never expected to become a surrogate papa of sorts to other children afflicted with Mito.

“I have had families from all around the world contact me – parents from Saudi Arabia, China, Australia, and elsewhere…they often find me through a simple Google search. We now have over 40 kids on the trial at the Montreal Children’s Hospital, all funded by the Liam Foundation. And we will continue to raise funds and awareness to make sure that these trials continue.”

The foundation also continues to seek out grants from other organizations and sources.

“However, we are still leaving way too many youngsters behind. So, I have decided to work with doctors from other countries – including medical professionals from Brazil and India – to get the trials into different countries as what is called a ‘compassionate’ drug for now. This will allow other kids that cannot travel to take the medication and help slow down the progression of the disease. However, this is a long process in some countries, and it might or might not work, but we will do what we can, and we will definitely do our best.”

So far, 2024 has been a challenging year.

“We have lost too many kids to Mito over the past 12 months. I have had the privilege and honour of knowing many of these beautiful souls and every single day I think of each and everyone of them. I keep them in my heart, along with their parents who are struggling to survive with the loss of their child.

“You would think all this loss would break me, but it does the complete opposite – I am more motivated than ever to find a cure for Mito. We will find that cure for them and everyone else and for Liam. Please keep these kids and families in your thoughts and prayers. For now, we keep taking little steps – but always forward…”

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