Having one child battling Batten disease was heartbreaking enough, but now Noblesville natives Brandon and Ashley Gray are caring for two children with the same deadly affliction.
Batten disease is a rare neurodegenerative disorder that affects the body’s ability to break down and eliminate cellular waste, causing a build-up of proteins, sugars and lipids. The build-up causes problems in the brain and nervous system, such as vision loss, epilepsy, cognitive issues, delays in speech, trouble with coordination and weakness of the limbs.
The Noblesville community is showing its support for the Gray family at the Brody & Briggs Batten Battle Ride Sept. 28 at VFW Post 6246 in Noblesville, 654 S. 9th St. The ride begins at 10 a.m., and the event will feature bingo, raffles, T-shirts and a hog roast, among other activities.
All proceeds from the event will help relieve the family’s financial stress associated with medical and travel expenses.
The Grays, who moved to Franklin four years ago, said their 4-year-old son Brody was diagnosed with Batten disease in June. Their 2-year-old son Briggs received his diagnosis in August.
“We both have the (Batten disease) gene and it mutated,” Ashley said. “In easier words, the boys are missing an enzyme, and waste is building up in their brains. The disease is attacking cells and will eventually kill the cells in their brain.”
The couple first noticed signs of the disease in Brody when they were at a pumpkin patch last fall.
“Everything was great. Brody was climbing tall hay bales, which is something he would never do,” Ashley said. “We went on a tractor ride, and he had missed his nap that day. I looked over (and) his head was in his lap and his eyes were closed. We tried to tickle him to see if he would laugh and there was no response. They stopped the tractor ride, and we put him on the floor of the ride, and he started to have a seizure.”
After calling 911, Ashley said doctors told the family every child was prone to one seizure. Two days later, however, Brody had another seizure and was taken to Riley Hospital for Children, where the family was paired with a neurologist.
“He was diagnosed with epilepsy, but it just kept getting worse,” Ashley said. “He was having more seizures and wasn’t able to see. He just wasn’t where he should be at his age and kept digressing. We asked for genetic testing, which is how we found out he had Batten disease.”
The couple, which has four children, was told the siblings needed to have genetic testing because there was a 25 percent chance each would have Batten disease and a 50 percent chance of being carriers of the gene.
“When (the doctors) called me, the first thing out of their mouth was that Briggs has Batten, and our other two children are carriers (of the gene),” Ashley said.
There is no cure for Batten disease, but with biweekly treatments of medication infused directly into the fluid around the brain, medical providers can focus on treating symptoms. Brody had surgery in August to place ports in his head and chest to receive the enzyme replacement.
The family travels to the Nationwide Children’s Hospital Batten Disease Clinic in Columbus, Ohio, once a week to receive treatment for Brody. They are also in the process of training a service dog. Briggs has not yet started treatment or shown any signs of the disease.
“We typically leave on Wednesday nights because Brody has to be there at 7 a.m. on Thursdays,” Ashley said. “It is a seven-and-a-half-hour appointment because it is a slow process of (administering) the medication.”
Ashley, a Noblesville High School graduate, said the treatment slows the disease’s progression.
“It should help Brody (not lose the ability) to walk as fast. He should be able to eat longer without getting a tube,” Ashley said. “The only thing we don’t know if it will help is his seizure control. We definitely know it won’t help his vision, so he will go blind before anything.”
Brandon said Brody is getting the best care possible in Columbus.
“They care and they are compassionate. They are the experts. At the clinic, his doctor is basically the founder of (Brody’s) enzyme treatment and started research in 2010,” Brandon said.
The couple said the diagnosis of their two boys has been one of the hardest things the family ever has had to navigate.
“We thought epilepsy was bad, or just having one kid with something. Having two is something I would have never been able to imagine,” Ashley said. “There is nothing we can do to help or fix the situation. Time is precious and we are trying to give them the best life we can right now.”
To donate to the Gray family, visit gofundme.com/f/help-brody-battle-batten-disease?lang=en_US&utm_campaign=fp_sharesheet&utm_medium=customer&utm_source=copy_link.
Brody & Briggs Batten Battle Ride
The Gray family and VFW Post 6246 have teamed up to hold the Brody & Briggs Batten Battle Ride Sept. 28 at 654 S. 9th St. with kickstands going up at 10 a.m.
The event is $20 per bike and is also open to the public regardless of if they ride or not.
All proceeds from the event will go to the Gray family. There will be several vendors and family-friendly activities for kids to enjoy.
For updates, visit facebook.com/profile.php?id=61562282956394.
