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Sami’s EWRAP Story

Sami rides an adaptable bike down a country road A view of the back of Sami's adaptable bike Sami sits on her bike and smiles at the camera. Shows a CHARGE Syndrome Foundation license plate on the front of the bike.
Sami was born with a cleft lip and palate leading the doctors to begin checking for other abnormalities. They found she had multiple congenital heart defects and a heart that “has all the right parts but not in the right places,” deafness, colobomas affecting the optic nerve and retina in both eyes, inner ears that are not correctly formed, no inner circular canals for balance,  brain atrophy, dysphasia, unilateral choanal atresia, olfactory deficiency, sleep apnea, and asthma.  She  later developed seizures. We were told she would never see, hear, learn more than 20% of what other kids learn, read, and might not walk.  We learned later that some of her specialists didn’t expect her to live and, if she did, thought she would be a “vegetable.”  Fourteen years and 23 surgeries later, Sami is thriving!  She learns at her own pace, loves to read, hears with cochlear implants,  sees with her right eye, and dances!  Her seizures have halted!  Her sleep apnea and asthma are both now mild. After more than 10 years on a feeding tube due to swallowing difficulties and silent aspiration, she has learned to eat by mouth!  But one thing she could not manage was to ride a bike.

A couple years ago Sami was given a beautiful bicycle from a friend.  She tried so hard to balance on it, but, even with training wheels, it was impossible.  Thanks to the Ethan Wolfe Recreational Assistance Program (EWRAP) Sami is now able to find joy in riding her brand new three wheeled bike!  Like other kids her age, she loves the feeling of independence and the mobility.  For kids like Sami, every single  accomplishment is a reason for celebration and this is no exception!  Sami and her parents appreciate Jody and David Wolfe, and EWRAP so much!  Thank you for the chance to do “normal.”  Thank you for finding such a wonderful way to remember Ethan.  He lives on in our hearts and through the joy you are bringing to other kids with CHARGE.