Share Our Story

Tell us about yourself and the patient in your life: 

Allison Nicole is 4 years old turning 5 next month. We are from Youngstown, Ohio but we are Latinos from Puerto Rico. Allison is non-verbal, g-tube fed, Autistic, and has Cornelia de Lange. Allison had her first seizure when she was 5 months old she has generalized seizures. Allison loves to play with her chewy tubes and she also loves watching Blipping. She enjoys to be around her big brother Derek and likes to be in bed with mommy and daddy watching tv.

Allison has been doing good with Ketogenic Diet and CBD Oil. She has around 2 seizures per month.

She’s on Physical Therapy, OT and Speech.

What is your hope for the future for your loved one:

I hope someday to find a treatment to help kids with Cornelia de Lange and Seizures so they can live a better life.