Ep30(p2)-Chantele, Rett Syndrome

What if your 17 month old typically developing daughter almost over night lost the use of her hands, the ability to speak, or even hold eye contact…How would you move forward? If you’re a parent of a child with special needs, you know the answer. You just do. You put one foot in front of the other, you get all the services you can, you research until your eyes cross, you send a letter to the doctor who told you never to expect anything, you fight fiercely for your daughter and help her live a beautiful, wonderful life surrounded by strong, capable and loving people. Chantele, a thoughtful, wise and inspiring mother, spoke with me about her 21 year-old daughter Havana, diagnosed with Rett Syndrome. We talk genetics, coping, seizures, survival, inclusion – we shed some tears, we chuckle, we witness the heart break and celebrate the victories!