The Miracle Continues: A SMA Angel

Rewind:  They told us to take her home and make her comfortable - she would not see her second birthday.  Fast Forward:  She is thirteen and all she wants is a Big Time Rush pillowcase!  What?  That was October 18 1997 - "we think she has SMA Type 1".  So how can we take care of her?  There is no treatment or cure.  What do we do it she gets a cold, stomach ache etc?  There is nothing that can be done.  WTS? There has to be - this is not 1970 or 80 or 90 this is 1997!  Look on the internet -- yes there is information - not good but we need to find out what we can do where we can turn.  Are there other families?  Yes -- there are.  What are they doing?  She s 8 months old with a great smile, happy attitude and a love for life.  Fast Forward:  Who is Big Time Rush?  Just the new boy band out that every teenage girl is in love with!  Take that you doctors -- she is a teenager enjoying the crushes of a teenager.  Enjoying through the years all the hits -- first Lizzie McGuire ( Hillary Duff), Hananh Montana ( Miley Cyrus) and NOW Big Time Rush her first true big time Crush boy band.  Bring on the concerts -- we are ready.  Take Her Home and --- Make her Life Liveable.

More on a SMA. Angel.....

I told you how SMA started in our family a few posts ago.  When Madison was DX in October, my sister had already set a photo shoot date in August for the Angel Shoot for children at a local photography company.  It was in November almost one month from the date she was DX.  Angel - reading all the information about SMA  and the kids being mentioned as angel was to weird.  She went to the angel shoot and all the pictures came out amazing.  (see photo of all the angel pictures of Madison over the years).  These photos became the image for our annual fundraiser called  Madison's Angels at the End Zone.  Madison's Angels became the designation for all of our donors, vendors, family, friends, volunteers  and fundraising events. 

So it is October and we will celebrate the 13th anniversary of the SMA DX.   The two holidays were coming up, my mom could not stop crying every time she came down to visit when she saw MAdison.  We had to tell her to stop because MAdison was going to be ok.  But then how did we really know -- believing and staying positive is the best way to attack the negative.  We made lemonade when our lemons were thrown at us!  Madison continued to show us the way - she was still smiling, learning to talk, eating her baby food, playing in her exer-saucer (which was really cool), She was growing into a little person - a person with a personality, emotions, feelings, etc.  Still, how can this little girl have this huge disease!  Was it unfair?  Maybe - maybe not.  They say things happen for a reason.  MAdison was put her for a reason - to let us know that no matter how terrible things can be you need to find the positive and work to keep your life in check.  Amazing how a little kid not yet a year can radiate such positive energy.  

Every morning she would wake with a smile on her face and her eyes wide open - waiting to absorb what will happen in her world that day.  She never wanted to be limited - she went all everywhere.   SMA was not going to stop her.  Or her family.  More to come ....  (Note:  The MA in Madison is Madison's Angels - what a fit!)