ANN ARBOR – Azeza Kasham lost her son, Hiatham Breadiy, to Lafora Body Disease in 2019.
The former student at Pioneer High School was diagnosed two years earlier with the rare genetic brain disorder which typically manifests during or just before the teenage years. He was 16 when symptoms began.
Ten days after Hiatham passed away, Kasham and her husband Elayyan Breadiy were told that their 10-year-old son, G.G., also has Lafora. The condition begins with seizures and causes individuals to lose their vision, mobility and appetite over time. There is no cure.
“The doctors have no idea where to even begin with his disease,” said Kasham.
G.G. sees specialists at UCLA, the same hospital where Hiatham received care. His only hope is getting into a clinical trial for a drug that has the potential to stop the disease from progressing, Kasham explained. She said the trial is currently in limbo due to a pharmaceutical sale.
She said while G.G. doesn’t yet have a full manifestation of the disease, she can see the physical and emotional toll it is taking on him.
The couple launched a fundraiser to help pay for an experimental medication they say will buy G.G. time until a clinical trial opens.
A sliver of hope
Kasham remembered being told at Hiatham’s final doctor’s appointment that it is possible for parents with the gene mutations that cause Lafora to go on and have children without the disease through IVF.
“I thought to myself: ‘Maybe that would be something nice to have something to look forward to because we’ve gone through so much with this awful disease,’” she said.
After one failed IVF cycle, Kasham and her husband were given some encouraging news.
Of the 16 embryos, one did not have Lafora.
“It was so amazing and I was so shocked,” she said. “What if one doesn’t work? Genetic testing told us the gender, which was even more surprising that it was a boy. This disease affected my boys.”
She added that Lafora affected both male and female embryos.
Kasham is now seven months pregnant and said she is encouraged that she can continue to have children. She also has a six-year-old son and an 18-year-old daughter.
The couple plans to donate the remaining embryos with Lafora for medical research.