Chelsey's Story

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

Memphis ,Tn.

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

ATROPHY. 

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.