MitoAction Energy Walk — Hartford, CT

Meet the Collins Boys

My cousin Andrew was a lively child who loved to roughhouse, laugh, and had a particular fondness for tractors. He was always eager to play with the older children in the neighborhood and his cousins, often until he was completely worn out. His infectious laughter was unique, sounding like a snake’s hiss. Andrew was born on August 19, 1996. His parents began to worry when he wasn’t meeting his developmental milestones. 

Then, one day, Andrew had his first seizure. Over the years, he underwent many tests without success, continuing to experience seizuresEpisodes of abnormal electrical activity in the brain.. At five years old, a grand mal seizure required his admission into an epilepsy monitoring unit. Despite a long battle in the final weeks of his life, he tragically passed away peacefully at home, with his loving parents by his side. Although Andrew had passed, his parents later underwent a full battery of genetic tests in an attempt to understand their late son’s affliction. Unfortunately, their search did not provide any insight into the diagnosis. 

On December 8, 2003, a second son, Lance, was born. Lance was a precious child who developed a fascination with trains as he grew. He had a ritual of lifting his feet when crossing train tracks, a habit that still comes to mind when I cross railroad tracks today. As Lance aged, he began to miss developmental milestones and started experiencing seizures. Further complicating his health, he was diagnosed with adrenal insufficiency and started on steroidsThe man-made version of hormones that are naturally made in the body. That are designed to act like hormones to reduce inflammation.. His medical journey led him to the Cleveland Clinic and later to the Mayo Clinic. Shortly after returning home, Lance suffered a grand mal seizure and was urgently airlifted to a larger hospital in Austin, Texas. My aunt requested that I stay with her at the hospital for a few days. It was then that she revealed they had a diagnosis: Alpers-Huttenlocher Syndrome. Tragically, three days later, Lance passed away, just like his brother Andrew, at the tender age of five. 

My aunt and uncle were the most loving, nurturing, and fiercely protective parents I’ve ever known. When I asked her about her reaction to the diagnosis, she expressed anger. Her feeling of helplessness was what distressed her the most. She was a zealous advocate for her children just like any parent, but the limited knowledge about Alpers-Huttenlocher Syndrome and other mitochondrial diseases meant that many children remain undiagnosed due to a lack of awareness, funding, and research. While many diseases are preventable, mitochondrial diseases are not among them. Few other illnesses with such high morbidity and mortality are as poorly understood and recognized. These diseases merit more attention so that children like my cousins Andrew and Lance may one day grow up to have their own families.

I’ve made the decision to organize this charity race with the hope of raising awareness and, ultimately, alleviating the suffering of families affected by this cause. My aim is for the funds raised to contribute to ongoing research efforts, bringing us one step closer to finding a cure.

Thank You Sponsors and Donors!