It’s hard to believe as I sit here in Oregon experiencing a rare 80 degree day that one week ago today I was at milepost 14.5 in pouring rain experiencing my first marathon and waiting for my partner Lisa to come by. When I signed up to be a patient partner I had no idea what to expect. I knew little about running and a whole lot about the marathon I was living with MLD.
How do I say thank you for letting me a part of an awesome experience and an awesome team?! To me the whole experience felt like the “Make a Wish” trip I never got to go on. To be treated so special because of who I was and not because of my disease. To take part in the expo, to be a participant in all the marathon excitement and in the marathon race itself. To see the tears in my mom’s eyes at milepost 14.5 when Lisa came up and gave me a hug as I cheered her on and to see she was wearing the silver butterfly pin that represents all those with MLD on her shoulder during her race. It was unbelievable what I was feeling and impossible to put into words. Lisa capped it off by presenting me with the finisher’s medal at the post celebration. Something I had not expected. We HAD been partners every step of the way!
Another forever memory was meeting Phil in person and getting a hug from him. He made it all possible for me to be a part of this by dreaming up the concept of creating patient partners and running for rare diseases. Had he never followed that dream I never would have met such caring, compassionate people, been able to tell my story about living with MLD or have my forever memories of being a part of the Running for Rare Team!
Everyone who ran, brought awareness to rare diseases, and raised money for the undiagnosed…thank you! It means so much more than those words can express.
To Phil, Lisa, Isabel, and Joe, you are tucked away forever in my heart and I think of you as family!