💔 “Azeza never imagined she would have to walk this road twice”

Years ago, Azeza’s family lost their son, Hiatham, to Lafora Disease — a rare and devastating neurological condition that causes relentless seizures and slowly takes away a child’s independence.

Just weeks after that unimaginable loss, her son Gigi was diagnosed with the very same disease. A second blow no parent should ever have to endure.

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

We spent the day with Azeza and her family and witnessed firsthand what true strength looks like in the face of overwhelming grief.

🏠 A family carrying more than anyone should

Gigi lives at home with his parents and his younger brothers, Thayer (9) and Abdul (2). Their father has faced serious health challenges, including cancer, a heart attack, and ongoing medical complications.

Because of his condition, he is unable to work. For years, Azeza carried much of the family’s financial responsibility, working long hospital shifts while also caring for Gigi.

As Gigi’s condition progressed and Azeza faced her own medical complications, she had no choice but to stop working so she could remain by his side full-time.

Now, the family is struggling to keep up with basic expenses, including their mortgage, while navigating one of the hardest seasons of their lives.

⚠️ Living without accessibility

Their home is not accessible for Gigi’s needs. Because he cannot be safely carried upstairs, he sleeps on the main floor.

Azeza currently bathes Gigi in the garage, using heated water, because the shower is inaccessible. These daily challenges take a physical and emotional toll.

A wheelchair-accessible van and home modifications would dramatically improve Gigi’s comfort and allow the family to live with more dignity and safety.

🤍 A mother’s heart

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 is simple: to spend meaningful, peaceful time with Gigi without the constant weight of financial stress.

🕊️ How we can help

Lafora Disease has no cure. Most children affected do not live past early adulthood. While we cannot change the diagnosis, we can ensure this family does not face this chapter alone.

• Medical and daily living expenses
• A wheelchair-accessible van
• Accessibility upgrades to their home
• Mortgage and essential bills — so Azeza can focus on being present with her family

Your support helps replace fear with stability, and isolation with compassion. For this family, it means everything.