10-20-08

Hi! We are the Vance family, Chip, Mindee, and Lilly Ann.   Katie Mae was born November 19 2008 just 8 weeks after this photo was taken.  She was a big healthy baby girl, 8 lbs 12 oz and 21 inches.  She was so beautiful.  Chip and I felt that with two beautiful little girls our family of four was now complete.

11-22-08

Katie Mae was so different from Lilly (then 19 months).  But as most parents will tell you “no two children are the same”.  So we accepted the differences until Katie missed every expected milestone.  She was 4 weeks when we started to become concerned about her lack of movement.  She could not lift her head, arms or legs.  She never struggled when we changed her diapers.  She did not wiggle in the bed or roll from side to side and her voice was a whisper, not a bellow like her sister.  

12-1-08

We made an appointment with our pediatrician to ease our suspicions that something was wrong, but to our dismay, that was not the case.  Instead, he scheduled us with a neurologist immediately and told us that Katie Mae was “quite floppy”.  The neurologist confirmed that something was wrong with Katie.  We scheduled the appropriate diagnostic tests and took Katie home.  

We began physical therapy and Katie Mae got stronger and began to move more.  She was even able to pick up a tiny little jingle ball (kitty toy with bell inside) which led us to believe that she did suffer from a congenital disorder but with time and therapy she would be just fine.  We were even more convinced of this when our first scheduled appointment after her tests was in the Physical Medicine Department at Children’s Hospital.  We were under the impression that we were going to learn about physical therapy options.  And again, to our dismay and astonishment, we were told that Katie Mae suffered from Type I Spinal Muscular Atrophy (SMA) and would most likely not live to see her 2^nd birthday.  We were told that the best we could do was to take her home and love her.  So we did. 

On April 27^th, 2009, Katie Mae passed away, in the home where she was born just 159 days earlier, from SMA, the number one genetic killer of children under 2, a disease that we did not even know existed, let alone that we were carriers.

The unfortunate truth is that our story is not unique.  Two children are born every day in the United States with SMA, and I have never read a testimonial where the parents were expecting a child with this disease.  Devastated parents are blindsided by the diagnosis, even though SMA is believed to as common as Cystic Fibrosis.  This is why we began our campaign Know SMA.  While there are many groups and individuals lobbying for prevention and screening, supporting families who are surviving with SMA, and researchers looking for a cure, there is no one successfully telling “Joe Public” that SMA exists.  We felt compelled to try to fill that niche. 

We have formed a not-for-profit organization to do just that.  Our organization will be run solely on donations and funds raised through charity events.   Our officers will waive any salaries in order to put every penny raised into advertising and awareness campaigns.