Our Story


Brianna was born on May 13, 2003.  She was delivered by c-section by choice.  I had one with my son previously.  Everything went fine with the pregnancy and the delivery.  We had a beautiful baby girl.  She was absolutely gorgeous.  Beautiful clear skin,  a head full of jet black hair.  Everything I had dreamed of.  We took her home.  Things were good, except for constipation.  The first week or two she was constipated and you could tell it really hurt her.  Now I know the reason of the constipation. We had NO problems with feeding or sleeping, she slept thru the night.  I had to go back to work after our 6 weeks home so she had to go to daycare, which I was okay with because my son had been there since he was 6 weeks old and I was really comfortable with them.  So as things went on Brianna's daycare teacher had motioned that she was not bearing weight on her feet like she should.  But I had no major reactions to this because nothing was wrong with my daughter.  But I eventually got concerned and when I took her to her 6 month check up I brought this up and the doctor said she was probably just lazy.  So I thought he knows best.  Brianna had bronchitis 2 times before she was a year old and you could tell she had a very weak cough.  So at her 9 month check up I said something is very wrong with her she does not crawl or even try to, she does not put herself to a sitting position, so he referred her to a neurologist.  Of course her app was 2 months away.  So when that time came they asked questions and took blood,  lots and lots of blood.  I cried the entire time they did that, they ordered a MRI and a muscle bio.  The MRI was right away and the muscle was weeks away.  The blood work results would be back in 4-6 weeks.  But the whole time I never imagined anything like this I just thought she would need some therapy and things would be fine. We celebrated her 1st birthday with a Care Bear party.  About 2 weeks after her B~day we got a call from the neurologists nurse and she said that he wanted us to come in on Wednesday, and to cancel the muscle bio.  I thought that was good news boy was I ever wrong.  So on Wednesday my husband, Brianna and I went to hear the most devastating news that we had ever heard.  As we went in I could just feel something was really wrong.  As he said those words Your daughter has SMA and she will probably not live to be 2  it was like the world was falling in on me it's very indescribable from those words on I heard nothing else he said. He tried to explain how she got it where it comes from and how her life would be But I heard nothing but your daughter will die.  Her dad was of course upset too but he tends to hold things. He is my strong support.  He see the good where I see all bad.  They redone the blood test just to double check.  It came back positive also.  I called the family before we left so they could meet us at home so we could let them know all at once what was going on.  Brianna had a 6 year old brother to tell and that was the hard part.  We got some friends to watch him while we told the others.  Brandon (Brianna brother)  still does not know that she will die but he does know that she will not walk and the she will be in a wheelchair and that it is very important that she does not get sick.  We started PT right away.  2 times a week. Brianna has had a swallow test and she does aspirate so we thicken her liquids.  She is still eating well.  but she is a very normal 2 year old she don't like to eat anything good for her.

I can't say our life is normal cause it will never be again.  For months I just tried to prepare myself for her to die.  I know that sounds awful.  I know when her times does come I will go crazy she is MY life.  I do not want her to suffer though.  But until then I will cherish every minute I have with my baby girl.  Things with Brianna have been pretty good so far no major complications she is not on any breathing machines, no g tubes or anything I hope and pray it continues like this.    Winter time is coming and that scares me.

I know God sent me this very special angel for a reason, not just anybody gets a special angel like this.