Every two years, I attend a conference for people affected by my son’s genetic syndrome. Doctors and scientists participate, joining families with affected children of all ages and abilities. Some can walk and talk or use sign language, others can’t. Many suffer from seizures, heart disease, and full body skin rashes, and depend on g-tubes or wheelchairs. Almost all of them laugh or smile.
Strength in numbers
What happens when families affected by rare genetic disorders meet?