BES student braves Alexander Disease, attends fundraiser gala this weekend
Bellefontaine Elementary School second-grader Brayden Clary is a bright-eyed, blonde-haired 7-year-old who speaks fondly about his family, his pets, and his teachers and school staff members. After moving to a new Huntsville area home with his family this fall, he is especially enthusiastic about decorating his new bedroom with a Toy Story theme.
The spunky and smart boy with a sweet smile has bravely faced difficult times in the past year, including a six-week hospital stint in late 2018 to determine what was causing difficulties for him in gaining weight, and also a hospital stay this spring to install a MIC-KEY G tube so that he could receive nutrition via continuous feeds.
“Despite all that he’s been through, he never complained much, and he just loved his nurses and Child Life staff that would visit with him each day. He also liked that we could order food on the TV,” his mother, Whitnee Hand recounted with a laugh.
“I think his attitude was a bright spot for the staff, and he sure is for our family as well. He is a vibrant little guy with such a bright and positive look on life.”
While Brayden was hospitalized from November to December 2018, his doctors finally were able to identify the cause of his growth challenges that had proved a major hurdle for him since he was about 1 year old — a genetic condition called Alexander Disease that affects less than 250 people in the world.
The progressive condition currently with no cure is a type of leukodystrophy, a group of disorders that cause deterioration of the white matter, or myelin, in the brain. Alexander Disease occurs when Rosenthal fibers form and attack the myelin sheath, causing issues with the communication of nerves in the brain.
While the first year of Brayden’s life went relatively smoothly, once he reached age 1, he “fell off the growth chart” after experiencing persistent issues with vomiting, his mother said. He began seeing a gastrointestinal specialist at Nationwide Children’s Hospital in Columbus, but no specific diagnosis was given for his feeding and growth challenges during his first six years of life.
“They ran all sorts of tests, but everything always came back negative with no real solid answers,” Hand said. “We went to check-ups at Children’s every three months, and they really weren’t able to pinpoint anything other than that he was a ‘pukey’ kid.”
However, last year, his mother said she raised concerns with the doctors after Brayden lost seven pounds between his regular check-ups from July to November.
“His weight would fluctuate all the time, but this was very alarming,” she said. “We began seeing a new doctor, who said, ‘We’re going to get to the bottom of this problem,’ and Brayden was admitted to the hospital for six weeks for additional testing.”
The initial tests during this hospital stay came back with the same results, but an MRI showed a different story for Brayden. Medical professionals located a tumor on the base of his brain stem, the center that controls nausea and vomiting, and they also noticed white matter deterioration.
“The geneticist pulled us in the room and informed us about that he showed the signs of Alexander Disease, cautioning that we would need to do a genetics test to make sure,” Brayden’s mother said.
“You ultimately think, ‘Is this fatal? What’s going to happen to my child? It was an unsettling time that really turned our world upside down.”
Genetics testing confirmed the Alexander Disease diagnosis Dec. 4, 2018, about a month after Brayden’s seventh birthday Nov. 9.
Although the disease is very rare and it has only been a short time since his diagnosis, Brayden’s family already has been linked up with a wealth of resources to help combat the condition.
He regularly sees a neurologist at Dayton Children’s Hospital who has previous experience treating a patient with Alexander Disease and the 7-year-old undergoes MRIs every three months. The BES student also sees a neurosurgeon and neuro-oncologist at the Dayton hospital to check on the tumor.
“The lesions on the brain are usually not cancerous, but they are always monitoring it to see if it is showing unusual growth,” Hand said.
Once a year, Brayden and his family also travel to Children’s Hospital of Philadelphia to see Dr. Amy Waldman, a pediatric neurologist and specialist in Alexander Disease who is conducting clinical trials. The CHOP visit involves a number of appointments throughout an entire week.
This weekend, efforts by Dr. Waldman and Albee Messing, Ph.D., a researcher from the University of Wisconsin, also will take the spotlight when Brayden’s family and others attend a fundraising gala specifically for Alexander Disease in Akron.
The Love, Hope, Cure Gala is organized by Elise’s Corner, named in honor of Elise Bonsky, an Akron area girl close to Brayden’s age who also has Alexander Disease.
The gala and the fundraising efforts truly provide hope for families of children dealing with this devastating neurodegenerative disease, which over time, causes individuals to slowly lose their ability to function and previously attained milestones, such as the abilities to eat and walk.
Funds from the gala event currently are being raised toward research, including funding for a drug being developed by IONIS Pharmaceuticals that would block the Rosenthal fibers that develop in Alexander Disease.
“If this drug does become available, it would halt the progression of Alexander Disease. It would give a lot of kids the chance for a healthy and happy life headed forward. It would truly be amazing,” Hand said through a few tears.
“We will be hearing updates from IONIS Pharmaceuticals at the fundraiser. We keep hearing different dates that the drug will be available, possibly in 2021 or 2022; they run out of funding a lot because it is such a rare disease that it treats.”
The promise of this potential new medication and the chance to meet other families facing Alexander Disease makes for an special weekend for the local family. Brayden also is a son of Dustin Clary; and his stepfather is Hand’s husband, Jason Horne.
In recent months, Hand said she has been able to interact with Elise Bonsky’s mother on a regular basis through online means.
“I’ve talked with Elise’s mom a lot, but we haven’t had the chance to meet in person yet, so we are really looking forward to our time there,” said Hand, an Indian Lake High School graduate. “It will be nice for Brayden to meet others with Alexander Disease. It is really like an extended family.”
For further details about the Love, Hope, Cure Gala, including how to make donations, visit the Elise’s Corner Facebook page. The organization is a non-profit through the Akron Community Foundation, where donations also can be made by searching “Elise’s Corner” at www.akroncf.org.