Two years ago today we got the news that Sophia has Spinal Muscular Atrophy Type 1…..I thought I would wake up today and feel defeated and sad, but instead I woke up bright an early to my daughters beautiful face and have never felt more alive…..I could sit here and write how heartbroken we were two years ago today but instead I will write how I feel today, we are at a place in our journey with SMA that is filled with so much Hope and Promise, we are on the brink of wonderful things to come. The last two years have been filled with ups and downs and we choose to focus on the UPS….and I am proud of all the obstacles we have overcome….One thing remains the same, two years ago today our lives as we knew it changed forever…..but not for the worse …for the better…Sophia is on a mission and I am so proud of her, so proud of the achievements she accomplishes….. I also woke up today to a beautiful letter, a letter that brought tears to my eyes….because after reading this letter I knew and felt in my heart that my daughter is making a difference….
I don’t remember exactly when I first learned about Sophia and her family. But I do know that it was through the website that we all call LIF (lifamilies.com) Catherine has always been very open to our LIF community about Sophia and what she is going through and I had always felt like she was really trying to educate those of us who had never heard of SMA, to spread the word. How can you not instantly fall in love with Sophia? I greatly admired Catherine’s willingness to open up her world to us. For me, I had never heard of SMA before. Of course, the first time I read about Sophia and her SMA diagnosis, I went straight to Google to find out more and I have been “following” Sophia and her family ever since with the help of LIF, Facebook and sophiascure.org. I have never actually met the Gaynor’s (yet!), but somehow feel like I do because of all the information they share about Sophia with the world.
There came a time that I decided I wanted to really try and do something to raise some money for Sophia’s Cure. The inspiration came when I saw the foundation was trying to get 200 people to commit to raising $5000 in order to reach the goal of $1 million. As someone who has never really considered myself to have any marketable skills, I couldn’t quite figure out how to reach that goal. So I have set a personal goal to raise $500 for Sophia’s Cure. It’s a start. I realized that I love to make cupcakes for my children’s parties at daycare and thought maybe I could turn that into something. Then it hit me. I love to make cupcakes, kids love to eat them and children have a birthday 1 time each year. I got permission from the director at the daycare to put a flyer in the cubby of all 180 students at the school.. It basically educated the parents about Sophia and the foundation and asked that the parents consider giving me the opportunity to make cupcakes for their child’s birthday when they celebrate at school. 100% of the money I make will be donated to Sophia’s cure. Within the first week of the flyer going out, I already have 12 orders for cupcakes throughout the year, with 2 orders already completed! Another amazing thing to come out of this is that by simply spreading the word about SMA, other great things happen too.. One of the mothers at the daycare told me that she works for a local school district and was so touched by Sophia’s story she will be starting a collection for Sophia’s Cure after they return from Spring Break!
My cupcake adventure for Sophia simply feels like something I was meant to do, as silly as that may sound. I look forward to the day that I get to meet them in real life and thank them for making me a better person with a greater purpose! ~Amanda Whiteside