Cecily is one happy little girl. She is very affectionate and loves to be outside in all types of weather. Her favorite toys play music or light up, and she loves books, swimming, and animals. She has made tremendous progress with special education, physical therapy, speech therapy, occupational therapy, vision therapy, and music therapy. She is learning to communicate choices with pictures instead of words, and she continues to practice standing, stepping, scooting, crawling, and hugging. Her favorite people are big sister Daphne and little brother Louis. In her (almost) 6 years in this beautiful, complicated world, Cecily’s life has been full of big love and little adventures.

Cece also has Pitt Hopkins Syndrome, an extremely rare genetic condition with significant developmental delays. It can also cause complications with seizures, breathing, and gastrointestinal issues. Most individuals with Pitt Hopkins take many years to learn to walk. Most will never speak. Cece’s specialists expect that she will be among those that walk, but not those that speak.

There is one other characteristic of this syndrome that deserves mentioning: despite their challenges, people with Pitt Hopkins Syndrome tend to share a happy demeanor and a big, beautiful smile. Cece’s smiles are the silver lining to the lifelong challenges presented by her syndrome.

We believe she is perfect the way she is, but we also believe that fighting for a cure is the most worthwhile endeavor we can pursue. Researchers are currently working on promising treatments that could prove invaluable for Cece and her rare sisters and brothers around the world. Please join us in our quest for a cure for Pitt Hopkins Syndrome. We don’t just hope for miracles; we fight for them.