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.”
Christie and Eric noticed their daughter wasn't meeting expected milestones and at 5 months, Elie was diagnosed with infantile spasms which is a seizure disorder, resulting in developmental delays and intellectual disability. Multiple Diagnoses Lead to Love and...
Jessica and Johnathan were shocked and relieved to receive a diagnosis for their son Trenton. Jessica struggled for years to find a doctor who would help her. Her journey in advocacy led her to start a nonprofit organization called Collaborative Corner for Exceptional Children. A company dedicated to helping parents find resources and become advocates for their children with disabilities.
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...
Jacob is the first person to ever be diagnosed with a single gene mutation. His parents have learned to live in the moment and love their journey with him.
At the time of his diagnosis, Parker was the 85th case person to be diagnosed with ADNP syndrome. He has a rare genetic condition that can cause a variety of different abnormalities. Kayla and Josh talked about their journey towards finding a diagnosis and what life...
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.
Will has three older siblings and all of them have a disability. His childhood wasn’t “normal” but his siblings have shaped him into who he is today.
As young, college students, having a child with a disability wasn’t on their radar. Alyssa and Ben were shocked when they learned at their 23-week anatomy scan that their son, Will, had some brain abnormalities. They were heavily encouraged to abort their son....
