A Mother's Heartbreaking Battle Against Ultra-Rare Lafora Disease
In a devastating turn of events, a Michigan mother is confronting the unimaginable loss of a second child to an exceptionally rare and fatal neurological disorder. Azeza Kasham, who tragically lost her son Haitham Breadiy to Lafora disease in October 2019, now faces the same heartbreaking reality with her 16-year-old son Gehad, diagnosed just ten days after his brother's passing.
The Cruel Reality of Lafora Disease
Lafora disease represents one of medicine's most challenging frontiers. This progressive neurological condition manifests during adolescence, triggering severe seizures and significant intellectual decline. The prognosis is particularly grim, with most patients succumbing to the illness within five to ten years of symptom onset. Currently, no cure exists for this devastating disorder.
The genetic nature of Lafora adds another layer of tragedy. The disease only occurs when both parents unknowingly carry a faulty gene that they pass to their child. According to medical statistics, this condition affects approximately one in ten million individuals worldwide, making it exceptionally rare.
A Family's Unimaginable Struggle
"Gehad was a normal kid, just like his brother Haitham," Kasham revealed in an emotional interview with Arab American News. "One day, he just fell on the floor and had a seizure. Doctors then told me the disease is genetic."
Now approaching his seventeenth birthday, Gehad—affectionately known as Gigi—has reached the late stages of the illness. He depends entirely on a wheelchair for mobility, and his mother is desperately trying to cherish every remaining moment with her son.
"Ultimately, I'm going to lose him," Kasham confessed to Fox News. "I want to feel like I did everything I could for him, and right now I don't feel that way."
Multiple Battles on All Fronts
The family's challenges extend far beyond the medical aspects of the disease. Kasham revealed that the only pharmaceutical company researching a potential cure for Lafora recently terminated their project, eliminating a crucial source of hope for affected families.
"I'm battling this disease," Kasham explained. "I'm also battling the pharmaceutical company that abruptly stopped the medication. And I'm battling his needs."
Financial pressures have compounded their difficulties. The family struggles to maintain mortgage payments and cover essential bills during this profoundly challenging period. Their home lacks basic accessibility features, forcing Kasham to bathe her son in the garage using warm water because their shower cannot accommodate his wheelchair.
Community Support Through Crowdfunding
A GoFundMe campaign established to provide "comfort and care for Gigi's Final Days" has nearly reached its ambitious $600,000 goal, receiving over 15,000 individual donations. These funds will address multiple critical needs.
The money will facilitate essential home modifications to improve accessibility, including creating a wheelchair-accessible bathroom. Additionally, it will help secure a specially adapted van to enhance Gehad's comfort and safety during transportation. Medical expenses, mortgage payments, and essential bills will also be covered, allowing Kasham to focus entirely on being present with her family during this precious time.
Medical Perspective and Public Response
Dr. Nancy McNamara, division chief of Pediatric Neurology at Corewell Health, emphasized the severity of this condition. "I often think about this one being one of the worst diseases that you could have," she told Fox News.
The heartbreaking story has resonated deeply with the public, prompting an outpouring of support on social media platforms. Many donors shared personal connections to the family, with one writing: "Azeza showed me kindness when I worked alongside her at her job. She takes care of everyone and is one of the kindest people I've met, despite everything she's been through."
Another supporter expressed: "I am so very sorry you and your family are going through this yet again. Prayers for you and all who are touched by this!" while a third commented: "Your family will always be in my prayers. God bless and enjoy every precious second."
As the Kasham family navigates these final stages with Gehad, their story highlights both the devastating impact of ultra-rare diseases and the power of community support during life's most difficult challenges.
