My Story

Hello, my name is Brooke.  I am now an 11 month old, redheaded; blue eyed little girl with SMA type I.  My mom's name is Ashley and she is a 28 year old, single mother.  My mom and grandmother opened this website to tell you my story and to keep you updated on my condition.

I was born on June 11, 1998 at 5:30 p.m. and I weighed 7 lbs and 6 oz. and was 20 inches long.  I brought a lot of joy and happiness and love into this world with me.  The day after I was born I got to leave the hospital and go home to live with my mom, grandmother, granddaddy and Aunt Donna and our dog Amos.  Mommy and I were happy to be home.

My first three months were pretty good.  I was kicking my legs some, moving my arms and even started to roll over a little bit, but not quite all the way.  My mom and grandmother noticed that when they laid me on my stomach I could not lift my head up.  My mom was concerned.  She mentioned it to my doctors when she would take me for my well-checks, but they would just tell her that she was an over anxious mother and that I would eventually do the things that I was not doing for a baby my age.  She would take me home and would hope and pray that what they were telling her was true, but as time went on I started getting much weaker.  I was not even kicking or lifting my arms as much as before.  When I was 5 months old my mom and grandmother took me to see one of the best pediatricians in this area.  After examining me she had a very concerned look on her face.  She picked me up in both her hands and I just started slipping through them.  She told my mommy and grandmother that something was definitely wrong with me and she was sending us to a neurologist right away.  In fact it was that very day!  Dr. Pena Michi was very nice.   After he examined my my mommy and grandmother could tell that what he might have to say was not going to be too good.  He told us that he believed I might have Spinal Muscular Atrophy.  He explained to us what that was.  We had never heard of it.  My mom asked if it was treatable and he said "no".  My grandmother then asked if it was terminal, and with a sad look on his face, he said "yes".  My mom and grandmother immediately broke down and cried.  I knew that whatever was wrong with me must be really terrible.  He sent us to another hospital for the EMG and blood test, which after a month of waiting we got the diagnosis as "positive" SMA Type I!  The doctor there told my mom and grandparents to take me home and enjoy me because I probably wouldn't live to be over 2 years old.   It was a very SAD day!  I was 6 months old by this time.

Well my family tried to adjust to this sad news.  Christmas was here almost before we knew it and guess what-it was a great Christmas for me!   Santa made sure I had a lot of stuffed animals and clothes!  My granddaddy took tons of videos and pictures.  Somebody is always snapping a picture of me, it seems!

My Granddaddy

I want to spend a little bit of time now bragging about my granddaddy, Eddie.  Before I was diagnosed with SMA I was going to a day care during the day while my mommy and grandmother worked.  I had lots of fun there with Mrs. Dottie and the other children.  There was another infant and about 4 two year olds.   The bad thing was that I kept getting colds and ear infections.  When I was diagnosed with SMA the doctor said it would be best if I did not have to go to day care.   The less germs I was subjected to the healthier I would stay.  Well my grandmother and mommy had to work.  My granddaddy who is retired because of an accident he had on a horse a year earlier said he would be more than happy to stay home and care for me!

I love being at home with him during the day.  We have so much fun together and we are best buddies.  We love each other so much.  In fact I love him so much that I even call him da da.  I know that makes him feel special.   He's all I really know as a daddy figure anyway and boy is he a good one.  He gives me so much love and happiness.  We just have a real good time together.   When my mommy or grandmother gets home from work he leaves for the farm to take care of the animals.  When he is not around I look all around for him and when he finally comes home I cast him my "sweet eyes" and a great big smile.  It makes me so happy to see him and hear his voice.  My granddaddy tries to set things up to make me have to reach for them.  He says it makes me "work out".   He wants to see me get stronger instead of weaker.  I like pleasing him.   I try hard to reach and pull the things he ties by my swing over to me.

Favorite Things To Do...

I love to play with balloons.  I love to watch them float.   I'll grab the strings and pull on them to watch them bounce up and down.  I also have this angel bear that plays music and flaps his wings to the music.  Mommy gave me that for Valentine's Day.  I love going places in the car.  My grandparents have taken me to visit my great grandmother who lives 300 miles away.  I love riding in the car or truck.  I've even been to Tennessee with my grandparents.   My poor mommy seems to have to work most of the time.  She misses out on the trips.  But each evening when she gets home she plays with me, sings to me and makes me laugh until it is time to go to bed.  Then she sings and rocks me to sleep.   That is one of my favorite things to do too!  I have to admit that I am well taken care of by a loving family that would do anything for me.  They call me their little angel sent from God.  I like being an angel!

Thanks for dropping by - I'll be updating my condition as time goes by.