My Introduction

[Guest guest]

Hi Ya'll,

My name is Kelli and I'm a 42 yr old divorced Mom. I was diagnosed with CMT at

age 3. Growing up I didn't know anything about CMT, let alone that I had this.

My Dad refused to explain to my brother & I that we had this. I can remember

asking my brother " why can't we run like the other kids? " He would always make a

joke of it and then we would laugh it off.

My Mom was a nurse and knew what we had. I guess my Dad had turned to drinking

to escape his pain, that was how he delt with CMT. Dad didn't want Mom to tell

us we had anything " wrong " with us, so she kept quiet. I always knew when I got

older I would find out more about this.

As time went on, I did start asking more questions. I was now pregnant, and

wanted to know what was the chance of my baby getting this. This was 1986, and

all I was told was it was a 50/50 chance. Never once did any doctor suggest that

I have genetic counseling.

I have learned so much since then, but I know I still have tons to learn. After

the birth of my son, which was a C-Section and very long labor, I didn't get

well like I should have. Two weeks after my son was born I was back in the

Hospital in downtown Boston, 1/2 hr away from family & friends and paralyzed. I

had started feeling a numbness at my fingertips & my toes, and it had traveled

slowely each day.

Thank God my Mom being a Nurse, she had been staying with me after we came home

with our new baby, she noticed the signs that something was terribly wrong with

me. The next day she had me at the doctor who did a spinal tap right there in

his office. The results...My spinal fluid was twice what it should be...His

advice was get me into Boston ASAP!!!

Now here I am in Boston, scared to death, and they tell me I have Guillian Barre

Syndrome. A disease that is very close to CMT, but kinda in an acute stage. I

could not believe this was happening.

When my family went home that first night, the nurse came in and said if the

numbness travels any higher tonight, we will have to put you on a ventilator. It

took all I could to manage the phone, but when I did I called my Mom and asked

her if I was gonna die? Both my Mom & my Dad told me to stay strong and never

loose hope and faith.

Well that was 1986, and it's now 2005. I kept one thing in mind. I had a son

that needed me, and if I didn't get better how would I explain this thing called

CMT if he had it. Unfortunatly my son was diagnosed at age 3 with CMT.

Unlike my parents, I have explained to my son everything about CMT that I know.

He is now 18, works at SeaWorld, loves playing the drums, and has had a steady

girlfriend that lives with us (long story lol) for 2 yrs now. I am blessed. He

is a great kid and not into drinking, drugs, or even smoking. I do wish he would

go to college, but I can't have it all. After having Guillian Barre, I became

disabled at age 30. I find that my hands have become very weak and disfigured.

I still get around inside my home with no aides. Outside the house I use

crutches for short distance and a scooter for long distance. My Mom retired and

moved to Florida last year. She lives with my son and I and his g/f. I moved to

FL 10 yrs ago after my sons Dad and I divorced. I too prefer the warm weather.

I sure hope I haven't bored anyone too much, and I'm looking forword to getting

to know ya'll. Take care for now.....Ciao,

Kelli