OUR STORY
Hadley Jo Brindley was born in May 2014. When Hadley Jo’s parents, Ashley and Casey, brought her in for her 18-month checkup, the only prevalent issues seemed to be abnormalities in her eye movement and trouble learning to walk. After being recommended to a local optometrist, the Brindleys discovered that Hadley Jo’s condition was much more serious than they had imagined. Delays in her motor skills indicated to the optometrist that she needed to see a pediatric ophthalmologist. They were referred to one at the Vanderbilt Children’s Hospital. It was there after an MRI of her brain that the doctors discovered Hadley has white matter on her cerebellum. This is the part of the brain that controls balance and coordination, explaining why she was struggling at learning how to walk. Hadley was then recommended to see a genetics specialist, and underwent many tests over the next year to see what the cause of her condition might be. After taking blood samples from Hadley, Ashley, and Casey, it was finally found that both of her parents carried the same type of gene error that was subsequently passed on to her. However, the specific gene error that was present in Hadley Jo had never been seen before by any of the specialists at Vanderbilt. The Brindleys began searching for anyone who might have seen anything like this before, and struck luck with a doctor in Cincinnati, OH. It was this doctor who, in February 2017, diagnosed Hadley Jo with Hereditary Motor and Sensory Neuropathy, Type VIB (HMSN6B). It is a very rare form of mitochondrial disease with only 20 known cases worldwide. They also learned that there is currently no treatment or cure for the disease. However, they are very optimistic in their efforts to discover something for her. Research is now underway to start figuring out how to fight HMSN6B, but a lack of funding has greatly hindered the process. As a result of much thought and many prayers, The Hadley Jo Foundation was started to help fund this research and find a treatment or cure for her and others who are suffering with this disease. We are becoming increasingly involved in the community, and are actively seeking as many promotions and sponsorships as possible. Every single penny counts in our effort to beat HMSN6B, and we need your help.
