Michigan Mom Battles Rare Disease Claiming Second Son

Azeza Kasham of Michigan is confronting the profound grief of losing a second child to the ultra-rare Lafora disease. Her son Gehad, 16, was diagnosed with the condition shortly after his brother Haitham passed away in October 2019. Lafora disease is a severe, progressive neurological disorder that leads to seizures and intellectual decline, typically resulting in death within 5 to 10 years of symptom onset. There is currently no cure for this illness, which arises when both parents unknowingly carry a faulty gene. Gehad, also known as Gigi, is now in the advanced stages of the disease and relies on a wheelchair. His mother is dedicated to cherishing his remaining time and expressed frustration over a pharmaceutical company's decision to halt research into a cure. The family is facing significant financial strain, with a GoFundMe campaign launched to support Gigi's needs. Donations are intended for crucial home modifications, including a wheelchair-accessible shower, a specialized van, and medical expenses. The campaign also aims to alleviate the burden of mortgage and essential bills, allowing Kasham to focus on her family. The GoFundMe has neared its $600,000 goal, drawing significant public support. Healthcare professionals acknowledge the severe nature of Lafora disease, with one expert calling it one of the worst possible illnesses. The community has rallied around Kasham, offering heartfelt condolences and support through social media.