When my daughter was in the 1st grade she met a girl named Katherine and they soon became good friends. Just like many of the other children, Katherine loved arts and crafts, Harry Potter books and the color purple. But Katherine stood out because she suffered from Spinal Muscular Atrophy (SMA) and had to use a wheelchair.
My daughter loved spending time with Katherine. Once when they were having a playdate, I heard her ask Katherine if she was sad that she couldn’t walk. My first response was to run into the room and scold her for asking such a personal question. But instead I listened as Katherine and she had the type of honest, heartfelt conversation, that as adults we often shy away from.
Sadly, Katherine passed away when she was 9 years old. All who knew her were devastated. The death of a child is heartbreaking and there really are no words to describe such a loss.
Three years later, when my daughter’s bat mitzvah was approaching, she and I started to discuss possible ideas for mitzvah projects. I brought up the idea of doing something in honor of Katherine. She was interested but didn’t know what to do or how Katherine’s family would feel about it. We met with Katherine’s parents and they too had wanted to do something. They told us to contact Families of SMA, (FSMA) an organization focused on funding SMA research to develop treatment and the disease. FSMA had been very helpful to the Santiago family throughout Katherine’s life.
The woman at FSMA suggested we run a Walk n’ Roll event. At first we weren’t sure, but then we decided to try it. Hopefully we could get a few of Katherine’s friends and family to come and maybe make a little money for FSMA. We set a date in the spring of 2007. My daughter mentioned it in her bat mitzvah speech and publicized it through the elementary school that both she and Katherine had attended.
As the event date approached, my husband and I got a little nervous. Would people attend? People are busy and the spring is especially crazy with activities. I worried that the event would not be able to accomplish it’s small but important goal of honoring Katherine’s memory.
Looking back on that first Walk n Roll, I am reminded of the famous quote in the movie Field of Dreams – “If you build it, they will come…”
My daughter and the Santiagos “built it” and they did come. Over 100 people came out that beautiful May morning. Friends and relatives of Katherine and my daughter, as well as teachers and classmates, all arrived at our very own Slayton field of dreams in Millburn, NJ.
One of the attendees was a young girl from Randolph that we had never met before. She too has SMA. Her family, friends and teachers found out about our little walk and were so happy to be a part of it.
The first year was so successful, My daughter and the Santiagos decided to run it as an annual event. Now in it’s 7th year, my daughter is away at college, so Katherine’s “not so little anymore” sister has picked up the reigns as chairwoman (she is 13 – the same age my daughter was when she started the event.)
I know when My daughter first started planning the walk seven years ago, there were moments that she thought, “What is the point? None of this will bring Katherine back.” That is true and it will forever be a tremendous loss. But the point is that people can make a difference in the lives of others— even when they are just nine or thirteen years old. Over the past seven years, the event has raised over $25,000 for FSMA. Each year, people mark the date on their calendar and arrive with their sneakers on to walk, talk and remember Katherine. Some people have been there every year and every year there are new faces too.
Along with the young girl from Randolph, the walk has also brought together other families that have been affected by SMA. We had no idea when started the walk that it would be able to do this – bring hope and support to so many other people.
The 7th Annual Walk n Roll to Cure SMA in memory of Katherine Santiago will be held at Slayton Field in Millburn on Sunday, May 18 at noon. The event is a one-mile walk, rain or shine with great refreshments.
Hope to see you there!