On September 17,1997 our daughter, Chelsey Nicole Baker was born. She weighed
6lbs.9oz.,19 1/2 inches long. The perfect little girl. We thought we had a
healthy beautiful daughter.
She was sleeping all night by the time she was 6 weeks old. By 6 months
old she was sitting up unassisted and by 8 months she was crawling
everywhere. Everything about her seemed normal. Her 1st birthday came and she was
not walking , everybody said "DON'T WORRY". She was pulling up but by the time
she was 15 months old .
I was trying to convince my doctor that she seemed to be doing less
pulling up. He noted low muscle tone, but told me again "DON'T WORRY" ,bring
her back when she 18 months old.
For the next month I watch her do even less pulling up. She had just
about stopped all together but she was still crawling. I decided I was not
waiting till 18 months, so I made an appt. We went and I finally convinced him
to do something. He made us an appt. with a neurologist at LeBonheur in
Our first appt. was in Jan.99. He checked her over good and also noted low
muscle tone in lower body but good upper. He sent us home and wanted to see us
in 3 months. I had to go to Hong Kong in April 99 because my father had triple
by-pass. When I got home I was hoping she would be walking but no such luck. I
had her evaluated in a program called Tennessee Early Intervention
System (TEIS), everyone was telling me she needed physical therapy. They
evaluated her and noticed a fine tremor in her hands. They recommended physical
therapy for her.
We finally got back to see the neurologist (the first one we seen wasn't
there anymore) and again he checked her over good. Low muscle tone noted again
and I mentioned the fine tremors in her hands. Still knew nothing almost 19
months old. He casually said he wanted to run a blood test just to come back
and have the blood drawn within the next 6 weeks. I left thinking this was no
big deal because he told us nothing. It finally drove me crazy (within a matter
of 3 days) I called back to find out the name of the test, SPINAL MUSCULAR
I didn't have a computer at the time so I had Chelsey's babysitter look
it up and I took it home and read it. I won't ever forget that night I just
knew that this was what she had. Everybody told me to quit thinking about it. I
took her back to Memphis that week and had the blood drawn. They told me it
would take about 2 weeks. That was the longest 2 weeks of my life.
The call came on a Thursday July 22,1999 and they told me the results were
in to be there Tuesday July 27,1999. I knew then and the next 5 days were the
worst in my life. Tuesday came, we went to our appt. Finally the doctor came
in, he told us she has SPINAL MUSCULAR ATROPHY TYPE 2. I was just in shock. My
mom had to ask everything.
All he told us was: 1 in 4 chances in every birth, life expectancy late teens early 20 and a deteriorating disease. Then he sent us home and told us he would see us in 3 months at the Muscular
Dystrophy Association clinic in Memphis.
The first day back was the worst. Everybody was calling. I could not deal
so I took the phone off the hook. We decided to go buy a computer so we did
and when we got home I found out one of my best friends was at the hospital
having a baby. I went even though I didn't want to. That was the last place I
wanted to be. When I got home my husband had us all hooked up and ready to go
and I did. I find Families of Spinal Muscular Atrophy and that was the best
thing in the world. I found other people who were dealing with this.
She started her physical therapy the next day. At the center where she goes
they had only had one case. They showed us a lot we could do at home with
her. It was a real scary feeling to know that no-one around us knew what
Spinal Muscular Atrophy was.
It has been a long and very hard journey. Chelsey is now 2 1/2 and is still
losing ability. She won't crawl much anymore, and when she does she drags her
whole body. She likes to stand on her knees (she has some rough looking knees).
We now go to physical therapy 3 times a week and she is going to preschool
also. She is a very bright little girl, she has known her abc's since she was 2
and now knows her shapes, colors and counts to 10 and she is very hard
worker. She tries so hard, she is always telling me I want to walk and she does
try. But it is just too hard.
It is so hard to sit back and watch your child deteriorate. I have moments
just out of the blue where I just cry. I am trying so hard to stay strong for
her. No One can tell us what lies ahead for us. All I know is to take each day
one at a time and enjoy it to the fullest. I never thought that something like
this could happen to me but it did and we are not giving up. The biggest
headache so for has been insurance.
Our lives have changed so much because of this. I now want to try to spread
the word about SPINAL MUSCULAR ATROPHY. Doctors are not informed (so how can
they help us) It's scary to take your child to a doctor and you feel like you
know more than they do. Its just not right. There are children dying from this.
If I can reach a few by this website then maybe they will pass it on. Hopefully together we can help find a cure for this.
So please pass this on and help us fight for our children's lives. They truly are special angels .
I will keep you updated on Chelsey.