16-Year-Old Boy Diagnosed with Fatal Rare Disease Days After Brother Died from the Same Condition

A Michigan mother, Azeza Kasham, is on a poignant mission to raise awareness about Lafora disease, a rare but fatal condition that has profoundly affected her family. Her two sons, Hiatham and Gigi Breadiy, have both been diagnosed with this debilitating disorder, which is characterised by seizures and progressive cognitive decline, typically emerging during adolescence.

Hiatham was first diagnosed with Lafora disease in 2017 at the age of 16. Unfortunately, despite treatment, he succumbed to the disease just two years later, passing away in 2019. The diagnosis marked a heartbreaking journey for the family, who were grappling with the impending loss of their beloved son. The situation took a further devastating turn when Gigi was diagnosed with the same condition only ten days after Hiatham’s death.

In an interview with Fox 2, Kasham spoke candidly about the impact of Lafora disease on her family and her deep desire for awareness. “Hiatham really wanted to make sure that this disease ended with him,” she remarked. Underlining the bittersweet memories, she added, “It’s nice to remember that they had happy days on this earth,” reflecting on the joy her sons brought into their lives despite the shadow cast by illness.

According to specialists, including Dr. Nancy McNamara, the division chief of Pediatric Neurology at Corewell Health, Lafora disease is one of the most devastating neurological disorders. Dr. McNamara explained that the disease typically presents with severe symptoms, including jerking seizures, loss of balance, and difficulties in communication. Tragically, even with treatment, a diagnosis often implies a grim prognosis; most patients have a life expectancy of around ten years post-diagnosis.

Kasham described the overwhelming burden of watching her son suffer from the very condition that robbed her of Hiatham. Speaking with raw emotion, she expressed, “This disease is taking him piece by piece. Ultimately, I’m going to lose him.” Her challenges are compounded by the fact that a research company working towards a cure for Lafora disease has recently halted its operations, leaving her feeling helpless in the face of her son’s deteriorating health.

Despite the challenges, Kasham has taken proactive steps, using social media to raise awareness about her sons’ health journeys. She has created an Instagram account dedicated to their experiences, where she shares both the struggles and the love they continue to provide each other. In January, she posted a heartfelt plea for assistance in acquiring a wheelchair-accessible van and making vital medical modifications to their home. “These are not luxuries—they are necessities for his care and quality of life,” she wrote in a moving caption that accompanied the post.

Kasham elaborated on the daily fears that weigh heavily on her as a mother. “Every day, I wake up carrying a fear no parent should ever have to live with,” she shared. “As his mother, all I want is to protect him, comfort him, and give him the safest, most dignified life possible—yet so much of this is out of my control.”

To support Gigi’s medical needs, a GoFundMe campaign and a Launch Good initiative have been established, aimed at alleviating some financial burdens. The funds raised are intended to facilitate necessary medical equipment and journey options that ensure Gigi can venture outside the confines of their home safely and comfortably.

Kasham’s relentless pursuit to raise awareness about Lafora disease serves as a stark reminder of the challenges faced by families grappling with rare genetic disorders. As she navigates this difficult path, her commitment not only honours the memory of her late son Hiatham but also strives to improve Gigi’s quality of life amidst ongoing challenges posed by the illness. The hope is that through increased awareness and community support, others may not have to face the same heartbreaking journey alone.