As soon as the neurologist saw Elie, he knew she had a serious condition and soon after diagnosed Elie with infantile spasms, which is considered a medically catastrophic seizure disorder. “It was heartbreaking,” Eric said. “I remember thinking that I didn’t know what to think. I didn’t know what to expect. It was a whole road that we couldn’t see in front of us.”
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...
Mason has a long list of medical complexities including a double chromosome deletion. Despite his many medical challenges, he is a light for his family.
Connie has been taking care of her daughter with cerebral palsy, cognitive impairment, and a seizure disorder for 41 years. She finds happiness every day.
Emerson was diagnosed with Congenital Nephrotic syndrome as a baby. Life has been anything but normal, but a kidney transplant will change everything.