The Little Legend Foundation is a nonprofit organization for youth and adults with visual impairments and disabilities. Our mission is to inspire the visually impaired through athletics, education, involvement and teamwork.
Bringing Ryleigh into the world was probably the most magical experience of my life. The pregnancy was pretty smooth and uneventful except around the 20-week mark where we discovered that we had placenta previa. But, thankfully, that had corrected itself way before birth. Ry was born at 12:12 PM on May 3, 2007. She was initially supposed to be a Claire or an Addison – we were waiting to meet her before naming her and we imagined she would look much like her older brother, hair, strawberry blond, and blue-green eyes. She did not. She came out with a head full of dark hair, olive skin, and dimples as deep as the ocean. We did get the eye color right though. 😉 We decided she didn’t look like a Claire or an Addison and that it how Ryleigh became Ryleigh Elizabeth Blades.
She was a good baby. Beautiful. Happy. Easy. She was only our second child so her inability to focus on us wasn’t too alarming. It was when I took her in to the doctor for a cold and left with a referral to a neurologist, that our lives changed forever. She was two months old.
The next month was full of MRIs, Ultrasounds, and tests searching for tumors and cancers…thankfully all came back normal. But seeing your two-month-old laying there in that MRI machine while holding her little foot, not knowing what we would learn was really horrifying. There was no official diagnosis at the time, nor was there a lot of indication of sight, so all we knew was she nystagmus and she could possibly be blind/visually impaired. It was in Tucson, AZ in the Spring of 2010, at her six-month check-up with the ophthalmologist, that he suggested she may have Leber’s Congenital Amaurosis, but we would need to get an ERG done to confirm. So we had one done. It made everything very real. Very official. We had an official diagnosis of LCA. Upon learning the seriousness of her visual impairment, we took action and we ended up in Saint Augustine, FL where she attended The Florida School for the Deaf and the Blind. We met many families and made many friends with others who were going through similar mourning and experiences. We also found Nemours where Project 3000 paid for our genetic testing and thankfully, identified her gene mutation (LCA AIPL-1).
Ryleigh is 12 now and in the 7th grade. She has spent the last few years in public school and is thriving. She is happy and beautiful. Her heart is kind, her patience is incredible, and her independence is fierce. She has truly embraced her visual impairment and doesn’t let her stop her from living her best life. She rides bikes, roller skates, swims, runs, climbs, and surfs! She loves acting, singing, and playing the piano. She loves Camp Abilities and she attends every year. Her sense of humor is radiant and her passion for life is inspirational. She is a true friend and a blessing of a daughter.
We did not know what we were facing when we were told our daughter couldn’t see. In that moment, all our dreams and hopes for our daughter changed. Feelings of grief and fear of the unknown ran deep. My child will never drive. She will never see a sunset. She will never see our faces or the faces of all four of her brothers and sisters. Will she find love? Will she be safe? Will she have to live with us forever? And as life goes on, we learned that she can do much…she does not shy away from trying and experience. She has dreams of attending FSU and becoming a vision teacher. She wants a family. We have learned that in each phase of life, there is more grieving and mourning. But we get through it. She has grown into such an incredible, bright, and independent young lady. And I am so proud to be her mother.
The Little Legends Foundation has done so much for her and others like her in raising awareness and funds and providing tools that aid in independence that are much too expensive for some us to afford. They have provided Ryleigh with a We Walk cane which we are so overjoyed to use. I cannot thank you enough.