Margaret and Mary are twins sisters with a very rare genetic disorder - Congenital Variant Rhett Syndrome, known as FOXG1. They have an older brother age 10 and a sister age 9.
The twins make amazing strides everyday and work so hard at school and their multiple therapies. While their long-term outcome is unknown because there is so little information about their condition – we have forged ahead on all fronts.
Unlike many others with their condition, we are fortunate that the girls eat with assistance, sit independently, read, and are learning to walk!! We are also working to match the girls with computer technology that can help them to communicate easier.
Since we live a full and crazy life traveling all over Ohio and to surrounding areas visiting museums, the beach, zoos, (and of course medical appointments) we would love to be able to save up enough for a handicap friendly vehicle for them.