I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child's life. There is no cure. Most doctors, if they take some time to learn about it, pass you around until some specialist says yes, they'll take you. Our daughter, Haven, is now 19 and has been living with this for almost 17 years. She was also diagnosed with Neuroblastoma Cancer, which is how we even found out about her ROHHAD. She's done experimental treatments to stop the progression. We believe it has helped tremendously but ultimately there is no stopping this disease.
Please take a moment and learn about Caoimhin Adams, an 8 year old boy from a small place in Ireland.
My condolences to the family.
