Running With Reason: Guest Post by Kristen Griffin
Donate to Girl Power 2 Cure to help girls like Martilee HERE.
Fundraising is hard. You get this guilty feeling… ya know, asking people for money. It’s even worse when they have never even heard of the disease or organization you’re fundraising for. Take that a step further, and have a family member that has struggled from said disorder since she was just 6 months old, finally diagnosed at barely under two years of age. My cousin has Rett Syndrome.
Let me rewind a bit. I first met Martilee when my (now) husband and I had been dating for about two and a half years. It was our third Christmas as a couple and we were finally starting to meet more family during the holidays and such. Of course, I had heard all about Martilee, had seen pictures of her and all, but I didn’t really understand what Rett Syndrome was and I’m embarrassed to say that I never inquired more about her than what was said. At that point in time, it was almost an “out of sight, out of mind” type of thing for me. Again, I’m truly embarrassed to admit this.
Then I met her. I saw her smile. I saw her curly blond hair. I heard her laugh. But again, that’s about all I knew about her and the struggles that Rett Syndrome imposes. I still didn’t ask any questions. The next summer I went to a family reunion with my husband’s family (again, just dating at that time). One of the afternoons, when the family was cleaning up and the kids were playing games, I was given the opportunity to sit with her.
I helped Martilee sit up straight. When I say helped, I mean that I let her lean on me on the couch, with my arm around her, making sure that she stayed put. Her body is not strong enough to support her height. Even though she’s light as a feather, her muscles can’t hold her up. Couple that with her scoliosis and she is not able to stand or sit without extreme assistance. Yet again, I didn’t ask questions. I didn’t want to step on any toes, or bring up bad memories of the past or fears of what the future might bring.
Fast forward to summer of 2014. My husband I were married in June, and swiftly went off on our honeymoon. I told Martilee’s mom, my new aunt Vanessa, that I would consider running the Disney Princess Half Marathon in February 2014 with her. She ran her first half marathon the previous February with a group of ladies (and some dads, uncles, sisters, etc) called Girl Power 2 Cure. I wanted to join her for that race, but hadn’t ran a half marathon yet and I was scared. I was scared to run that far (even though I completed the distance not even two months later). I was scared to learn more about the disease and what all it brings. It was just too soon to be out of my comfort zone.
When we got home from our honeymoon, I’m not even joking when I say that our first night back in our apartment I told my husband I was going to run this race for Martilee and I signed up right then and there. Vanessa was so happy to have a family member join her on this journey! I had no idea how to fundraise and I was living in a city where I knew very few people. I still didn’t know a whole lot about Rett Syndrome, but over the next eight months… boy, did I learn.
I learned that Rett Syndrome is a neurological disorder that mainly affects girls. A lack of a single protein in the brain of these girls causes to loss of function in their hands and their ability to talk. Many have scoliosis and are wheel chair bound. Many of these girls have a GI tube, because they’re not able to chew and swallow their food. There are many seizures and moments where they forget to breathe. Rett is just as prevalent as ALS, Huntington’s and Cystic Fibrosis, which means that 1/10,000 girls are born with Rett. That’s a little girl born every 90 minutes with Rett Syndrome! The very worst part of Rett though, is that these girls function at a high mental level. They know who you are and what you’re talking about.
However, research has proven that Rett is reversible and symptoms subside once the protein levels are back to normal!
That weekend in Florida with the group of people I met with Girl Power 2 Cure was one of the most rewarding weekends of my life. I could continue to tell you stories from the weekend but I honestly don’t have words for what I experienced. I still get choked up when I think about our team dinner and the little brother that raised over $1200 for his big sister with Rett. If you enjoy running, I strongly suggest that just once you run for someone other than yourself if you haven’t before. Run with hope that someday someone else will be able to run with you. I met many girls with Rett Syndrome that weekend. They all had varying degrees of symptoms. I cried with their moms. I laughed with their sisters. I loved these girls and I learned that Rett is so much more than just a disorder. For many families, Rett is a way of life.
I’m lucky to say that I’m running another race, and yes… I’m fundraising again, all for Martilee. I make anyone and everyone aware of Rett Syndrome and its complications every opportunity I have. Every run I take, I now think of Martilee and how hard she works in her sessions with her physical therapist. She works so hard just to take a few steps. I don’t quit because she doesn’t quit.
I’m happy to say that I understand Rett Syndrome now, and I don’t take that knowledge for granted. If you’d like to join team GP2C please feel free to inquire. If you’d like to donate straight to research and treatment of reversing Rett Syndrome, please follow the link provided below.
I run for Martilee. I run with hope that someday she may run too.