“Blake had significant delays from birth. But it wasn’t until his 4-year check-up that the pediatrician showed concern. He sent us to an ophthalmologist and a neurologist. It was at that eye appointment that he was diagnosed with NF1 as she found an Optic Glioma on his left optic nerve. That was the start of all our specialists getting involved with MRIs and other testing. At this time we discovered more medical conditions that are linked to his NF1. Blake has since been diagnosed with leg length discrepancy, anxiety, depression, ADHD, autism spectrum disorder, pectus excavatum, and femoral anteversion. He has struggled with severe back pain and leg pain since he could talk. He has done occupational therapy, and physical therapy and has seen many therapists. Including neuro testing. He struggles day to day with pain. Everyday life for Blake is complicated and painful. He struggles with trying to keep up with his peers. He gets frustrated when he can’t. He struggles with learning at school. He doesn’t learn at the same pace or way that other children learn. We live in a small town that isn’t very accommodating or understanding of his medical struggles.”
Blake’s father also was diagnosed with NF1 shortly after Blake was. The family is all hands on deck, helping take care of Blake and one another. Their trip to Florida was filled with relaxation and well-needed family time.
“It meant a lot for me, being able to see and do all these things I normally wouldn’t be able to do. My favorite part was being able to feed the dolphins.” – Blake
