ANN ARBOR, MI - Azeza Kasham said it's been rare to see her 16-year-old son Hiatham Breadiy smile since he was diagnosed with a rare form of epilepsy and quickly lost his mobility.
But Hiatham grinned as he sat in his family's new wheelchair-accessible van for the first time on Tuesday, Dec. 19.
"Thank you," he said to Luke Nolan, mobility sales manager for Advantage Mobility Outfitters in Wayne, who helped deliver the van to the family's apartment complex in Ann Arbor on Tuesday, Dec. 19.
Chive Charities, a national network of donors that contributes to various causes, raised $52,000 to purchase the Dodge Caravan outfitted by BraunAbility to make it wheelchair-accessible for Hiatham's family.
Now, Hiatham will be able to leave the house more often, and it will be easier to take him to doctor's appointments, Kasham said.
"This is such a big milestone, and I really can't thank you enough," Kasham said to Will Strieff, a volunteer administrator who coordinates the Michigan chapter of Chive Charities.
Strieff and his son came to see Hiatham and his family try out their new van for the first time on Tuesday.
In April, Hiatham was diagnosed with Lafora Progressive Myoclonus Epilepsy, a rare brain disorder characterized by re-occurring seizures and a steady decline in intellectual functions. Most patients live only 10 to 15 years after initial diagnosis.
But Hiatham's family hasn't given up hope.
He has been approved for a clinical trial with Dr. Berge Minassian, a professor and pediatric neurologist at UT Southwestern Medical Center, who has a lab in Dallas, Texas.
Kasham said she hopes that will offer at least a form of treatment for Hiatham's epilepsy, if not a cure.
"When they told me about Hiatham's disease, they told me, 'There's nothing we can do for you, Mrs. Kasham.' ... But I feel very confident that if I get him to the clinical trials ... it would be a form of treatment for him," Kasham said.
In addition to purchasing the van for the family, Chive Charities also bought Hiatham a laptop and held a fundraiser in Waterford to help with his medical expenses, Strieff said.
"Hiatham was brought to us, and we in turn, brought the attention of Chive Charities to him," he said.
Elayyan Breadiy, Hiatham's father, wheeled Hiatham up the ramp into the van on Tuesday. Breadiy recently dealt with his own health issuesafter being diagnosed with cancer in June 2016. He is now in remission, Kasham said.
Soon, Hiatham's younger siblings - Sophie, GG and Thayer - piled in the van, too. Breadiy took the driver's seat, and Kasham sat in the front passenger seat.
Breadiy has returned to work since his cancer is in remission, but the family's finances are still tight. They have set up a GoFundMe page to help out with daily expenses and the upcoming expense of traveling to Texas for the clinical trial.