We Feared That Our Son Would Never Be Able to Live on His Own

When our children were born, we had hopes and dreams for the fantastic parents we would be and for the wonderful life our children would have. We had a huge wrench thrown onto our plans. The second of our four children was born with a genetic disease called Familial Dysautonomia, which changed our lives dramatically.

We hadn’t planned on learning about this rare, neurological disease and the medical care, feeding tube, therapists, and the huge disruption to our life with his typical older bro...