Welcome to SMA #1 Genetic baby killer Joshua's journey. My name is Ian Fletcher Joshua's father and my family and I have been on the roller coaster of life since Joshua was diagnosed with SMA. SMA stands for Spinal Muscular Atrophy. SMA is a motor neuron disease that affects the voluntary muscles that causes children with this disease to not control their neck, move their hands, and leggs. Children with SMA are not paralyze they have feeling throughout their body. Joshua's Journey has been uplifting at times and also depressing.
We are in the process of starting the Joshua Joel SMA Life Foundaton to benefit the education of the medical community about this deadly disease. When Joshua was diagnosed it was amazing that we lived in Gainesville Florida with Shands at the University of Florida in our backyard and only one doctor knew about this disease. Many Nurses, Respiratory Specialist, Occupational and Speech Therapist, Nutritionist, and Doctors have never heard about this disease.
Currently H.R. 2149/S. 1158, the "SMA Treatment Acceleration Act of 2009" has been introduce to the 111th Congress. There is a nationwide call to action for signitures so please sign the petition to cure SMA.
This blog will be about Joshua's Journey daily with the progression of SMA in his body and the treatment he receives. As I am writing this blog Joshua's oxygen saturation dropped (desat) to 67. He was given oxygen to bring him back to normal saturation. As one Doctor explains it to us, every time Joshua desat he is attempting to die. I do not intend for this blog to be a horror story like many about this disease. It will be an enlighting journey not some Jon & Kate reality disaster.
No comments:
Post a Comment