We are the Smith Family from Lebanon County, PA. We have been blessed with three beautiful, intelligent and busy kiddos! Brayden is 16 and very active in basketball and baseball; Dawson our middle child is 12 years old and plays baseball, loves music and has even begun DJ’ing; and then there’s our beautiful daughter, Gracyn who is just about 8 years old. She has been dancing since she is 2 1/2 years old and recently became a Brownie, which she is enjoying very much. She also loves swimming, playing board games, putting on fashion shows with her friends and of course dressing up her puppy, Bella!
Gracyn was diagnosed at the age of 5 with a rare form of Retinitis Pigmentosa. Rare because instead of only affecting her peripheral vision, her frontal vision is affected as well. After failing her Kindergarten eye exam we visited a local optometrist, where she was prescribed glasses. Unfortunately they did nothing to improve her vision and we were then referred to a pediatric specialist who gave us the devastating diagnosis of RP. We had no idea what RP was or that anyone in our family had been diagnosed with this disease (we later discovered several older family members had been diagnosed with RP). We asked the doctor if there was a surgery or some type of treatment to cure this disease and he blatantly said “no”, there was nothing.
After several hours of testing at Hershey Medical Center we were then referred by a friend to a specialist at Wills Eye Hospital in Philadelphia, PA. Within Gracyn’s first year of treatment our physician identified that Gracyn was in need of the CRB1 gene. Just knowing what gene she needs in monumental! Now we need to make the CRB1 gene a priority so that she will have improved vision and can live a long, healthy and productive life!
Through the miracle of God, my husband was doing internet research one day and came across the CRB1 fund. We are very blessed to have found the Smedley family and to learn more about all the wonderful research that is happening for the CRB1 gene. Now, we need the funding to make CRB1 a reality for our beautiful blue-eyed Gracyn!!!!!