Fitter-Roll Family

09.23.2025

Amara is 9 years old and has FOXG1 syndrome. She has never said a word in her life, forcing her parents and siblings to guess when she's hungry, tired or sick. They've learned to adapt, but that's only one aspect of her disease they all live with. Amara has seizures, many small ones throughout the day, and refuses her seizure medications unless she’s held down. Her family tries to live a normal life, but big seizures hit when they least expect it, turning a short walk to the playground or a drive to the beach into a medical emergency that risks Amara's life. When the rescue medicines fail to work, the ambulance arrives. This unpredictable fear is not an exception, this is their norm.

09.24.2025

For Nasha and Oliver, their biggest fear is what happens to their daughter Amara when they die. Amara doesn't speak, she can't feed herself, put on her own clothes, or go to the bathroom alone. Her parents, her sister and her brother take turns helping. But when Nasha and Oliver are gone, where will she live and who will take care of her? When she's a grown woman without the ability to speak, who will make sure she's not physically abused? Will that burden fall completely on her siblings as they try to live their own lives, with their own families to care for? 

With Mila, I lived in fear of what life would be like without her. But for families like Amara's, their fear is what their children's lives will be like without them.