Pitt Hopkins Syndrome affects Renna in the following ways: low muscle tone, developmental delays, breath-holding, lack of speech, and potential cognitive impairment. It’s hard to know her true intelligence because of her motor and speech difficulties. But those of you who follow us and know Renna personally, know she’s the sweetest and happiest girl you’ll ever meet!  She works harder than most kids will ever have to and she’s progressing so well because of her determination!

Today she goes to preschool and is a part of their Early Intervention program where she received physical therapy, occupational therapy and speech therapy.  We also go to a local pediatric rehab hospital called Good Shepherd, where she receives physical therapy, feeding/occupational therapy, speech therapy and one of her favorites — swim therapy.  And lastly, another one of Renna’s favorites is music therapy, which she receives through a local arts therapy organization called Therapeutic Arts Group.

This fundraising page has been set up in honor of our sweet little Renna and donations will go towards research to hopefully find a cure one day.

The mission of the Pitt Hopkins Research Foundation (PHRF) is to support research dedicated to finding a treatment, and an eventual cure for Pitt Hopkins Syndrome and other similar disorders. The PHRF is also dedicated to supporting the Pitt Hopkins community with resource recommendations, parental support, and the latest medical information.

Thank you so much for your love, support, and prayers!

~ Brenda, Dave & Renna