A Michigan mother is speaking out to raise awareness of a devastating rare disorder after both of her sons were diagnosed.
Azeza Kasham, from Belleville, Michegan, has shared her family’s story in the hope of drawing attention to a genetic condition that has already taken one child and is now impacting another.
A specialist has described the illness as ‘one of the worst diseases that you could have’, and it can be inherited.
The condition is Lafora disease, which Cleveland Clinic says can lead to ‘seizures and cognitive decline’.
Lafora disease is an exceptionally uncommon form of epilepsy, estimated to affect roughly four people per million.
It is also progressive, meaning symptoms intensify over time and the individual’s ability to function can deteriorate over months or years.
Kasham’s older son, Hiatham, was diagnosed in 2017. He died two years later.
In a further blow to the family, Hiatham’s brother, Gigi, received the same diagnosis just 10 days after his sibling’s death.
Now, Kasham has spoken about the reality of living with the disease again, and how Gigi’s health is beginning to decline.
“Ultimately, I’m going to lose him,” she told FOX. “I want to feel like I did everything I could for him, and right now I don’t feel that way.”
Reflecting on Hiatham’s hopes, she said: “Hiatham really wanted to make sure that this disease ended with him.
“It’s nice to remember that they had happy days on this earth.”
As Gigi’s symptoms progress, the family says the day-to-day challenges are increasing.
Azeza said: “I’m forced to watch him suffer like this, and I need help. This disease is taking him piece by piece.”
According to Cleveland Clinic, the condition typically emerges during the teenage years and worsens as time goes on.
“Symptoms usually begin during adolescence and include jerking seizures, a loss of balance and difficulty speaking,” the site explains.
“The symptoms get worse as clumps of stored energy build up in your child’s nervous system, muscles and tissue cells. Treatment helps keep your child comfortable.”
Dr. Nancy McNamara, division chief of Pediatric Neurology at Corewell Health, emphasized how severe Lafora disease can be.
“I often think about this one being one of the worst diseases that you could have,” she said.
A GoFundMe has since been set up to help cover Gigi’s needs and support the family.
The fundraiser is aimed at assisting with medical and everyday living costs, a wheelchair-accessible van, home accessibility adjustments, and helping Kasham with bills so she can focus on caring for her children.