Story by Emily Robertson
The power of a mom taking action on behalf of her child is no small thing. And when Ashley Brindley found out her two-and-a-half-year-old, Hadley, was diagnosed with an extremely rare genetic disorder, Hereditary Motor and Sensory Neuropathy, Type VIB (HMSN6B), she couldn’t forget something their doctor said.
“During our appointment with Hadley’s genetics doctor, Dr. Huang, at Cincinnati Children’s Hospital, we talked about several things.” Ashley said. “One thing we discussed was how funding is hard to come by for rare disorders. He talked to me about how a mom in California started a foundation for her daughter with a different disorder 10 years ago.”
When Ashley returned home, she reached out to the mom in California. After emailing with the fellow mom and lots of conversations and prayers with her husband, Casey, the Brindleys decided to create a foundation to support, help fund research and hopefully find treatment and a cure for HMSN6B. On March 22, 2019, the organization received their 501©3 status and officially became The Hadley Jo Foundation.
There are only 20 known cases worldwide of HMSN6B, so information on the disease and support from other families experiencing the disorder is hard to find. The disorder, which is a mutation of one single gene, SLC25A46, affects a person’s gross motor and fine motor skills and for Hadley, she requires assistance in walking from either another person or a reverse style walker. Hadley’s optic nerve is also affected by the disorder and she has been diagnosed with Cortical Visual Impairment.
“Hadley’s diagnosis has not been easy, that’s for sure,” Ashley said. “But it’s never easy to hear your child has any type of disorder. There have been so many tears shed. It is just so hard hearing that not only does your child have a very rare disorder, but it’s also degenerative. Because it’s so rare, they don’t really know what the future holds, so I feel such a sense of urgency. Casey and I are truly blessed that God chose us to be Hadley’s parents. We think she’s absolutely perfect. I just want her to have a chance to do whatever she could ever want to do.”
Since the beginning of The Hadley Jo Foundation a year ago, the organization has been completely 100% volunteer-based. An executive board of five women helps lead the foundation and lots of family members of the Brindleys and friends have volunteered for the group. The organization hosted many events last year, but the three biggest events will be repeated this year including the BBQ fundraiser on May 15, Harvesting Hope on September 11 and Hightail’n for Hadley Jo 5K and 1 Mile Fun Run on September 19.
When they first started the foundation, Ashley was hopeful for their success in raising funds, but the first year of The Hadley Jo Foundation surpassed all their expectations.
“When we first met with the CPA to begin the foundation, he asked if I thought we could raise $50,000 in the first three years.” Ashley said. “I remember replying ‘Oh my goodness, I sure hope we can, but I’m not really sure.’ From March 22, 2019 to December 27, 2019, we were able to give $80,000 to Dr. Huang’s research efforts.”
In order to keep the momentum of the foundation going, Ashley said they always need more volunteers for big events they put on, as well as the smaller events, such as working concessions at Nissan Stadium. She said the only requirement for a volunteer is someone willing to use their time, business connections or talents to help the organization and the Brindleys are so thankful for the volunteers and community members who have stepped up from the very beginning.
“This community has been absolutely incredible,” Ashley said. “I wish you could have seen all the people standing in line at last year’s BBQ Fundraiser. It was amazing! And all the volunteers that were running around helping that day brought tears to my eyes then and it still does right now when I stop and think about it. We have received product donations, gift certificates and monetary donations from so many. It is so awesome.”
Through all the work and money raised, the Brindleys main goal is to raise awareness for this extremely rare disease, so that if someone has a child with similar symptoms, they are able to get to the proper specialists to get the testing and help they need. And you can see their love for Hadley guides all the work and time they put into the foundation.
“As she gets older it gets harder to explain the disorder,” Ashley said. “When she was younger she didn’t mention much of anything, but I remember the first time we were home and she looked at me and said ‘Mama, I can’t walk like you do’ and then the time she said ‘Mama, I can’t run like the other kids do.’” I remember sitting there trying to hold back the tears when I responded to her that she’s perfect.”
To find out about all the events the organization has planned for 2020, check out their website www.hadleyjofoundation.org or their Facebook page.