'He had the softest blue eyes, an easy smile and a contagious giggle. We always surrounded him with love and he returned it, and so much more.'
Alex Wong/Getty Images News/Getty Images
Born in 2015 to Engel and his wife, Mary Forrest, Henry began to miss milestones as a baby. After extensive medical testing, medical professionals determined that he had a mutation in his MECP2 gene — and he was diagnosed with Rett syndrome at around 3 years old. “Henry was special in so many ways. His loving and endearing smile, and the way he connected with his eyes, stole my heart from the time I met him. His quiet fight against this terrible disease was incredible. What is most amazing, however, is the impact Henry had on so many of us at the Duncan NRI and on our Rett research. We will continue to push as hard as possible to develop treatments. This is how we will honor his life.
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