ANN ARBOR – Hiatham Breadiy, 16, was an average teenager 14 months ago.
He was a student at Pioneer High School and enjoyed spending time with his family and friends until one day, everything changed.
After suffering from a number of seizures that doctors attributed to juvenile myoclonic epilepsy, Hiatham could no longer walk and had difficulty speaking.
"It's like he woke up with this," said his mother, Azeza Kasham.
After dozens of hospital visits, the family sought a second opinion at the Cleveland Clinic.
"They saw him the very first visit and they’re like, 'We’re so sorry we have to say this to you, but we think he has something bigger: Lafora body disease,' explained Kasham. "They told me to put him on hospice and there’s nothing that they can do for him. I went from that to: 'Okay, there has to be something I can do for my child.'"
Lafora body disease, also known as Lafora progressive myoclonus epilepsy, is a rare genetic brain disorder that affects very few people worldwide.
What makes the disease particularly devastating is that it only manifests when a child becomes a teenager.
When it strikes, it is sudden and it is terminal.
Kasham quit her full-time job at St. Joe's to become her son's full-time caregiver and has spent much of her time contacting religious institutions, charities and media organizations to bring her son's disease to light.
After spending hours researching the disease, she was put in touch with a doctor at UCLA who will be starting clinical trials soon.
"Right when they told me to put him on hospice, I got an email back from this doctor who said, 'Clinical trials start next year. The aim is to cure it. We will definitely be in touch, just try and hang on as much as you can,' is basically what he said to me," Kasham said. "We met together in September 2017, they said that they are 18-24 months away from doing clinical trials with the gene-based therapy."
Kasham took Hiatham to UCLA in March to see a specialist and enroll him in clinical trials. Hiatham's was supposed to visit again this month, but due to the fact that the family of six needs to travel, high costs mean he isn't getting the care he needs. Kasham and her husband, a custodian at the University of Michigan, have three other children.
"My family has suffered so much at the hands of this disease," said Kasham. "There are times that we have to think, 'Grocery store, or paying a medical bill?'"
"What we’re currently fundraising for is to get him into a wheelchair-accessible home. He’s been in the family room for 14 months. He hasn’t been able to shower. He can’t go upstairs. He doesn’t have much quality of life. We’re also fundraising for his medical bills because I can no longer work. This disease has taken everything away from us," she said.
One of Kasham's former coworkers at St. Joe's started a GoFundMe page for the family to raise funds to cover medical costs.
After months of advocating, Kasham met with Ann Arbor's mayor, Christopher Taylor.
"After speaking to the Mayor of Ann Arbor, he was like, 'Yes, we absolutely can proclaim a day.' He is such a nice guy," she said.
Mayor Taylor will be proclaiming Aug. 23 Lafora Body Disease Awareness Day as part of the City Council meeting agenda.
A portion of the proclamation states:
"Children with this diagnosis are sadly underrepresented in the field of research as the rarity of the disease means it receives little funding for genetic research. As a result of this, affected families are often financially strapped and left as the sole advocates for their children."
The doctors at UCLA told Kasham they’ve never seen a case like Hiatham’s. Children with this disease typically enter a vegetative state almost immediately and lose verbal skills, motor skills and require a feeding tube.
"He has a mutation that has never before seen in history," she said. "This makes everything even more bizarre. He amazes me. He has (grand mal) seizures and wakes up as if nothing happens."
Even on the hardest days, Kasham says Hiatham still gives her hope.
"People are very hesitant because they haven’t heard of this disease and they don’t know what it does," she said. "They also don’t know how hopeful this is. This isn’t a done deal. I mean, he went from his death bed basically to thriving. He’s thriving every single day. He still desires a cheeseburger. He still desires so much.
"I’m not just saying this as a mother -- I’m saying this as a human being -- I believe there’s so much hope for him. I believe that there’s so much out there for him come December. Will he make it? I absolutely think so. He’s held out for 14 months, I think he can hold out for another six."