35, wife to Brian and mother to 7 yr old Shelby. My daughter and I share the same diagnosis Osteopathia Striata with Cranial Scelrosis which is a rare genetic disorder that branches off in a 1000 different directions and I have yet to find a doctor to treat the disorder itself. Both my daughter and I were born with a cleft palate, suffer from severe obstructive sleep apnea corrected with the help of tracheostomies and both have moderate/severe hearing loss- we lip read and wear bi-lateral hearing aids.