ANN ARBOR – Ten days after losing their son, Hiatham, to a rare genetic brain disorder called Lafora body disease in October 2019, Elayyan Breadiy and Azeza Kasham’s second oldest son, G.G., was diagnosed with the same condition at age ten.
Also known as Lafora progressive myoclonus epilepsy, the condition typically strikes children in their teenage years. What begins as seizures with increasing frequency progresses to mobility loss, vision loss and loss of appetite.
There is currently no cure for the disease, and the only hope the few families in the world who are affected by it have are clinical trials.
Kasham said her family was shocked when G.G. was diagnosed, and are having to relive the trauma of watching the decline of another child with little support.
“It’s been extremely difficult on my family,” she said. “This disease is absolutely awful. Children who have Lafora have no advocacy, no help and their needs are endless. G.G. is going to go through the same stages as his brother, sadly.
“No person could ever imagine watching their child have 200 seizures a day. This is something people cannot imagine and people do not want to imagine.”
Kasham, who temporarily left her job at St. Joseph Mercy Hospital to care for older son Hiatham, said her efforts to rally support from the local community were met with silence.
“People don’t want to hear about things like this,” she said, adding that she believes people are hesitant to help because of her family’s faith. “There’s a difference between a white child that has a disease like this and a Muslim child.”
Kasham said the medical costs continue to mount and she has been fundraising so the family can move into a wheelchair accessible home. She said G.G. is in need of physical therapy and the family is saving money to travel to the University of California Los Angeles for a clinical trial in the summer.
“With this one medication being available for these families and families having to pay for everything, I really have to reach out to my community now more than ever,” she said. “The holiday is right around the corner, anyone that wants to donate to his cause can.”
Kasham has launched a fundraiser to help cover G.G.’s medical costs.
“We’ve lost so many people in our life after this disease because people don’t want to be around something so sad,” she said. “I’m hoping that people will want to make a difference in a child’s life that’s struggling locally.”
The couple also have a 16-year-old daughter and a four-year-old son.