FoxG1
Josie
When Josie, 4, was diagnosed with FOXG1 in 2014, there were 60 people in the world known to have the neurological disorder. Almost every child with FOXG1 has a different variation of the mutation, making Josie’s prognosis especially difficult. She cannot sit up unassisted. She can’t talk, nor can she take care of her most basic needs. Josie has special chairs to hold her up, a gait trainer, a stander, a bath chair, a special needs stroller, and will soon have a wheelchair. Josie laughs all the time and loves playing with toys and swimming.
Before we had nurse care there were six months from when her seizures started till our nurse care started, that we stayed up every night. We really didn’t sleep for six months. It’s funny what you can do when you have to. – Nicole, Josie’s mother
