Donna Renyolds, a Richmond resident, suffered the loss of her 9-year old son, Kellan, to a rare mitochondrial disease which impacted his ability to produce a normal rate of energy. Kellan experienced symptoms including constant fevers, mobility and immunity issues for most of his lifetime. However, due to the lack of awareness and funding of research for these rare diseases, the family found out about the diagnosis too late.“It makes me angry that it took so long. It was – they kind of lab-ratted him in the beginning and I feel kind of sad that he had to go through that,” 

Reynolds said. According to the National Institutes of Health, Rare diseases affect 1 in 10 Americans and the road to diagnosis may come to light after it is too late.

Dr. Mary Elizabeth Parker, a medical liaison with the U.R. Our Hope, voices her concerns stating “Most of the individuals that come to us, it takes seven years to get a disorder. And most children died before we got a diagnosis.” An increased amount of support for these rare diseases are needed, especially, in geographic regions which have lower access to affordable healthcare.