It took six years for Sandra to receive a diagnosis for her son Tony. He was diagnosed with ADNP syndrome and was the 11th person to be diagnosed. With little information available, Sandra set out to create more awareness for her son’s extremely rare disability. Ten years later, she has helped find a genetic file marker for...
Max was born with numerous medical complications involving his heart and brain. His short life brought his parents much joy and peace.
When Jackie was diagnosed with CHARGE syndrome, her mom was overwhelmed by all of her impairments. Since then, she’s learned to enjoy every day with her.
Angie worried about what her daughter’s life with Stromme syndrome would be like. She has come to learn that the world is full of loving, caring people.