Becky and Clayton's Story - May, 1999

I was born in September of 1975, in California to a Sailor and his wife. My parents knew from the start that something wasn't right when at 7 months old, and then 8, and then, 9 months passed,  before I could sit alone. Not to mention that I was floppy in nature, and my mother had noticed my sister was a little slow developmentally, as well. I finally crawled at 20 months, and was 28 months before I walked.

I can still remember how scared I was at three or so when I had the biopsy to confirm that I also had multi-minicore myopathy. Although I had only known it as minicore until recently.

I was given some physical therapy at home, until I was around probably four years old. I grew up off-balance, and scared to death of running.  Other kids laughed at me because I looked funny when I ran because my hips did not rotate very well. I also hated the balance beam, because I fell off quite a bit, so I took up swimming until I was in junior high. In junior high I found my passion to be singing.  I believe singing helps my respiratory system and I still spend at least three hours a day filled with singing, even if it is only nursery rhymes to my two kids.

I have been pregnant four times. I have two kids (boys), and have had two miscarriages, both at about 51/2 weeks. Is it related? I don't know, I do know my mother had many hard times with us, and as many as four miscarriages.

I am now affected primarily with fatigue, pain in my back, some incontinence, and weakness in my legs and arms. Sometimes just the thought of running after my sons makes me tired.

One of my children also has MCM. He sat at 8 1/2 months, crawled at 15 months, and walked at 23 months. He has severe learning disabilities, speech delay, and ADHD. He probably got some of these other things from other family members as my father-in-law was adopted and we do not know everything about his medical history. My son, Clayton has had four surgeries to try and repair or stabilize his flat feet. The muscle weakness has allowed his ankles to collapse, so the podiatrist placed stabilizers in his ankles so he can walk and run much better.

We are a military family and sadly none of our doctors know of this disease until we tell them about it. And truthfully, I knew very little until recently, myself. 

I look forward to hearing from parents and adults with this disease to compare notes. Pleas feel free to contact us at pbkcwilson@prodigy.net   (Listowner's note:  Unfortunately, this is no longer a valid email address.  Becky is no longer at this email address)  and I will be more than happy to write back. I would love to have a pen pal with this same disease to share experiences with!   I believe God gave us this to learn compassion and faith and trust, and love. For I can do anything in Christ who strengthens me.

Sincerely,

Becky Wilson