Mia's Story

 

Mia was born on May 7, 2009. Everything about her birth was completely normal; she sat up around six months, learned to crawl at about ten months. However, Mia was never able to bare enough of her weight to fully stand.

 

It wasn’t until after her first birthday when we started to notice that little by little, her crawling was slowing down, lifting up to her knees was becoming harder, and she still had not stood up. At that point, we decided to see a specialist, a neurologist, a geneticist, a GI doctor, an orthopedic and even put her in physical therapy.

 

By 18 months old Mia’s perfect crawl had turned into not being able to crawl at all, and even lifting up to her knees seemed impossible. That’s when we really started to worry, yet all the tests we were doing, MRI, CAT scan, EEGs, EMG, Nerve Conduction, and over a dozen different blood tests, were coming back showing nothing. At around 22 months, Mia could no longer go from laying down to sitting or put her head up from laying down on her stomach without using her hands to hold up her head. We completely lost it. To see your baby lose her motor skills more and more

and not know what’s going on is awful! It is an experience that I never want any other mother to have to go through. Finally, Mia’s physical therapist asked me to test Mia for SMA.

 

That night I went home and searched SMA on the internet because like most people, I had no idea what it was. After reading about this awful disease and seeing all the symptoms, my stomach started to turn. As much as I didn’t want to admit it, Mia fit the profile.

 

We asked Mia’s genetic specialist and neurologist that week to prescribe her the blood test. Both of the doctors did not feel the need to test her for SMA, but gave me the prescription anyway.

 

One month later, on May 16, 2011, the results came in... she had tested positive for Spinal Muscular Atrophy, Type II.

Although we had desperately wanted to know for a whole year what was happening to our baby, we quickly realized that we preferred not knowing. To find out that your baby has a degenerative neuromuscular disease with no treatment and no cure was absolutely devastating.

 

After about three weeks of crying and depression, we realized that we were not helping Mia at all by being upset. Instead, I decided to do something to help my daughter and to fight this awful disease. I along with two other mothers also struck by the devastation of SMA have decided to put on this Gala of Hope. With the proceeds from this gala going to fund the necessary research, we are forever hopeful that one day we can find a treatment and cure for this destructive disease. Please join me and my friends in our fight to find a cure for Spinal Muscular Atrophy.