In May 2015, our son Daniel was diagnosed with Retinitis Pigmentosa (RP). This causes Daniel to see with tunnel vision, which will progressively get worse overtime. The tunnel will get smaller, and eventually, it will result in complete blindness.
Daniel developed RP from a related genetic disease called Cohen Syndrome, which is characterized by intellectual and physical disabilities, congenital neutropenia, autism and retinal degeneration. He is currently 11 years old but functions at a 2- to 3-year-old level. Because of his developmental disabilities, he does not understand why he cannot see at times or that he’ll one day go blind.
As we drove home from Riley Hospital after Daniel’s diagnosis, my husband and I began researching and found the Fort Wayne Vision Walk, which benefits the Foundation Fighting Blindness (FFB). We immediately decided we wanted to help find a treatment/cure and formed “Team Daniel,” to help raise money and awareness.
In March, our family traveled to the University of Iowa to participate in new research which is focusing on genetic mutations and a gene editing platform that may be able to reverse blindness in individuals with Retinitis Pigmentosa. This research is funded by the FFB.
Team Daniel gives our family hope and something positive to focus on. We’ve succeeded in turning a very negative situation into something positive and inspiring. In almost 2 years, we have raised over $12,000 to benefit the Foundation Fighting Blindness!