While Melissa Howell may be a newer UMDF volunteer, she is not new to mitochondrial disease. The Stony Point, North Carolina, mom has two affected children. Melissa’s journey with mitochondrial disease began when her son, Gavin, started showing symptoms as a toddler. After reaching normal milestones, Gavin started to regress. Melissa was a new mom and had no idea what was happening to Gavin.
“I had a nurse tell me if I stopped bringing him to the pediatrician’s office, maybe he would get well,” she said, knowing that stopping his medical visits was not the answer. After finding a physician who could address Gavin’s needs, Melissa was welcoming her newborn daughter, Railyn, into the family. Unbelievably to her, Railyn started exhibiting the same type of symptoms as Gavin, and Melissa knew she now had two affected children. “To me, they look very much the same, but different,” Melissa explained. “They (her children) had no idea what was going on. They just wanted to play. They just wanted to be better.” After several years, Gavin was diagnosed with a POLG related disorder, and Railyn has a chromosomal disorder that requires further investigation. They are both home schooled due to fatigue issues, but she says the family has a lot of support from providers.
Melissa connected to the UMDF through Facebook. She remembers being told to contact Margaret Moore, UMDF Support and Education Associate. “I talked to Margaret for more than two hours,” Melissa remembers. After gathering information and knowing that her family was not alone on their journey, Melissa decided to volunteer with UMDF to ensure that patient families like her know they are not alone.
“Being a parent or a caregiver of a sick child is exhausting. But, I always remember that when I’m tired, how they, as sick kids, must feel.” Melissa, who was a team captain for a walk team in the Energy for Life Charlotte Walkathon, is now using her energy to help others this fall as a member of the Charlotte walk committee. “I want to be able to answer the questions other patient families have based on my experience”, Melissa said. “Most of all, I want to be able to offer them peace.”