A Guide for Family Caregivers of Loved Ones with Rare Diseases
Very Rare - Only 50 people in the world!
My name is Deb and I am the sole caregiver for my son Brian. He is 10 years old and is diagnosed with Hadju-Cheney Syndrome. This syndrome is very rare with only about 50 people in the world affected. He had a 10 hour surgery to correct a spine deformity. Both leg bones are in a serpentine shape. One is severe enough to where he walks on the inside portion of his ankle. He has numerous other traits, too, like hydrocephaly and deafness. When Brian was first diagnosed, I spent many hours researching for information. There was only 1 page on the internet that didn't have much information. I hope that other families with rare disorders have better information and resources than I do. There are no resources for Brian’s condition. Good luck to all caregivers. You are Angels on earth.