Fitter-Roll Family (1)
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.
Fitter-Roll Family (2)
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.
Fitter-Roll Family (3)
09.26.2025
I started the photo campaign 'This Is Today' to convey the weight of rare disease on families around the world - a small window into their lives. This week, I've shared snapshots of Amara who faces FOXG1 Syndrome. The photos are powerful, but they don't capture the subtleties of the emotions that fill her life and her home. And so we made this video...
Fitter-Roll Family (4)
10.03.2025
Like I did with Mila for so many years, Nasha fights to keep up hope, to stay positive, to raise the enormous amount of money and bring the scientists and doctors together to create a treatment for her daughter’s disease. But it's in the quiet, exhausted moments when she looks down at Amara and allows herself to wonder what her daughter's future will be? Will she remain confined to her small world where making friends is not an option? Will the fight be in time, seeing Amara receive a treatment before a massive seizure hits with no warning? And if Nasha and Oliver’s Herculean efforts actually change her daughter's trajectory, what will their life as a family look like?
Fitter-Roll Family (5)
10.09.2025
For Nasha, Oliver and their two typical children, they only know a life of extreme and often conflicting emotions that can change from one minute to the next. Immense love for Amara, immense sadness for what could have been, immense helplessness in the scariest of times, immense fear of what turn life might take that day, immense exhaustion, immense determination to give their daughter a second chance, immense drive to turn everything they are living through into a way of helping other families like theirs.