Noticing the signs
Alana was about 3 or 4 when we started to notice she walked differently. She would trip, fall, and could not keep up with her peers. When the genetic results came back, we learned that we both carry the same recessive mutated gene. There are many forms of CMT, but this is basically a one-in-a-million form. It was a big surprise to get that diagnosis.
Living with GDAP1
She has had four different surgeries now. The nerves do not clearly communicate with the muscles, so there is muscle wasting. She walks relatively well, but she has a hard time running. The hardest part for us is seeing her struggle to fit in, and the teasing at school.
Gene therapy is the miracle we have been praying for. We are very hopeful.
Alana's family
