Azeza never imagined she would have to walk this road twice.

Years ago, her family lost their son named Hiatham to Lafora Disease, a rare and devastating neurological condition that causes relentless seizures and slowly takes away a child’s ability to move, speak, and live independently. Just weeks after that loss, her son Gigi was diagnosed with the same disease.

Today, Gigi is 16 years old and in the late stages of Lafora. His 17th birthday is coming soon, and Azeza is doing everything she can to make the time he has left filled with comfort, dignity, and love.

We spent the day with Azeza and her family and saw firsthand what strength looks like.

Gigi lives at home with his parents and his younger brothers, Thayer (9) and Abdul (2). Their father has faced serious health challenges of his own, including cancer, a heart attack, and ongoing medical complications that have made it impossible for him to work. For years, Azeza has carried much of the weight of supporting the family financially, often working long hospital shifts while also caring for Gigi. As Gigi’s condition progressed, and Azeza’s own medical complications, she had no choice but to step away from work so she could be by his side full-time.

Now the family is struggling to keep up with bills, including their mortgage, while navigating one of the most difficult seasons of their lives.

Their home is not accessible for Gigi’s needs. Because he cannot be safely carried upstairs, he sleeps on the main floor, and Azeza currently bathes him in the garage using heated water because the shower is inaccessible. A wheelchair-accessible van and home modifications would dramatically improve his comfort and allow the family to move through daily life with more dignity and safety.

What stood out most to us was Azeza’s heart. Even through exhaustion and grief, she continues to fight every day for her children. Her greatest wish right now is simple: to spend meaningful, peaceful time with Gigi without the constant pressure of financial stress.

Lafora Disease has no cure. Most children affected do not live past early adulthood. While we cannot change the diagnosis, we can come together as a community to make sure this family does not face this chapter alone.

This GoFundMe will help provide: