As a child, during the summer months, the neighborhood kids and I spent our days on the corner of my yard selling lemonade to passersby. My mother would help us prepare the drinks, she’d supply the napkins and cups, and she’d write out on a big poster board: “Lemonade 50 cents! Help support spinal muscular atrophy today!”
At the time, this was my plan to help cure this disease. For as long as I could remember, perhaps since the very day I learned what SMA was, I wanted to contribute to funding research for a cure. Selling lemonade was the perfect way to do that, I thought. At the end of each day, we’d excitedly count our earnings and, almost always, the total would be close to $5.
To an 8-year-old, $5 was a huge chunk of change. I’d imagine what $5 could do for the SMA community and I was convinced we would be able to find a cure in no time.
With time, however, I slowly began to realize that selling lemonade wasn’t the most lucrative fundraising option. This wasn’t something that would prevent me from moving forward, but it made reconsider my options to the best of my child-like knowledge. That was when the Universe stepped in.
I mentioned this story a few months ago, in a column I wrote. This little lemonade stand was the beginning of my journey to fundraising and, ultimately, establishing a nonprofit organization. But what I haven’t yet mentioned was that one person truly was the catalyst behind all of my fundraising efforts.
It was the summer of 1998, when Marie, my occupational therapist at the time, walked into my life. Marie was all about adding an element of fun to her work. Every session, she would burst through the doors with a pep in her step and her loud, boisterous voice, cheering me on for what was about to be another successful therapy day. Best of all, she’d bring incentives. The first half of the session was dedicated to stretching and range of motion ― the not-so-fun part. And, although there was no mercy to be had from her, she would continue these exercises while adding little reminders of what was to come if I were to complete them.
After exercising, Marie would then reward me with cookies. That I had to bake myself.
Not only did I have to reach for the dough and roll the balls, but also Marie would hold the baking sheet up in the air and make me reach to place them there. After the dough was rolled and placed, she’d help me unwrap Reese’s Minis to push into the center of each ball. From there, my mother would pop them in the oven and I’d anxiously wait as my well-earned hard work baked.
During our last week of that summer session, we prepared ourselves for a goodbye. Because of the uncertainty of where the public school department would place Marie, we were saddened at the chance of having to leave each other. So, just as I did for any and every occasion as a child, I drew Marie a card.
Creating art was my little escape, so when it came time to send Marie off, I knew the perfect way to show how much she meant to me was through my artwork.
The card she opened that day was a picture of a yellow dog and a striped cat, named Precious and Tiger, respectively. I used my favorite colored pencils to color them in and outlined them with a thin black Sharpie marker. At the top, with my most perfect penmanship, I wrote, “THANKS FOR ALWAYS BEING THERE.”
So, with Marie persisting and my parents encouraging, I decided to take that leap of faith and finally raise the $100 I had been dreaming about for many years. And, well, the rest became history.
What started as a lemonade stand blossomed into a little art business, then exploded into a nonprofit fundraising organization — because of one woman who came to give her patient therapy. I love sharing this story with others, because it’s important to remember that SMA can introduce us to so many remarkable people: occupational therapists, physical therapists, nurses, and others, whom we may have never met if we didn’t have this disease. This reminder especially holds true during the hard days, when living with SMA feels like an uphill battle. Some people we meet will forever change our lives for the better, thanks to a disease that thought it had the upper hand. These people are worth celebrating. And these people are worth cherishing.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.