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Family works to raise awareness about rare Lafora disease
A mother from Belleville is hoping to raise awareness about Lafora, a rare genetic disease, after two of her sons were diagnosed with it. One of her songs has died, while another son is in the late stages of the disease.
BELLEVILLE, Mich. (FOX 2) - As Rare Diease Day approaches, a Belleville mother is hoping to raise awareness about a disease two of her sons have battled.
Gigi, 16, is in the late stages of Lafora body disease. His family learned that he had the rare genetic condition just days after his brother, Hiatham, died from Lafora.
The backstory:
"Hiatham really wanted to make sure that this disease ended with him," the boys' mother Azeza Kasham said. "It's nice to remember that they had happy days on this earth."
The disease occurs when both parents unknowingly carry a faulty gene that they pass on to their child.
"I often think about this one being one of the worst diseases that you could have," said Dr. Nancy McNamara, the division chief of Pediatric Neurology at Corewell Health.
Lafora is an ultra-rare genetic neurological condition that impacts roughly one in 10 million people. Symptoms typically begin in adolescence, and tend to start with seizures. Later symptoms include neurodevelopmental decline, cognitive impairment, and problems with walking and talking, McNamara said.
Most people with Lafora body disease do not live beyond their 20s. There is currently no cure for the disease - only medication to manage it. And with research on a cure recently halted, the family is losing hope.
"Ultimately, I'm going to lose him," Kasham said. "I want to feel like I did everything I could for him, and right now I don't feel that way."
Kasham said she feels like she is battling the disease, the company that abruptly stopped research on a possible cure, and her son's needs, which include daily medication, home modifications, and a wheelchair-accessible van, which they cannot afford.
"I'm forced to watch him suffer like this, and I need help," she said. "This disease is taking him piece by piece."
What you can do:
A GoFundMe page has been set up to help the family.
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