Good morning – my son and I have an X linked genetic disorder called Charcot Marie Toothe or CMT type 1X. This is a progressive demyelinating sensory motor disease primarily affects the hands and feet.
Recently my neurologist has noticed some atrophy of my hand muscles and weakness of my ankles. We are repeating our nerve studies. I just pray that my disease progression slows. That the doctors know how to treat this disorder and that new treatment options are developed. I pray for my son Caleb, that his nerves will be strong despite the genetic defect and that he will progress slowly.
Also pray that I’ll be able to continue working in order to support my family and that I’ll be able to continue to be an active participant in my sons life.