It’s hard to believe as I sit here in Oregon experiencing a rare 80 degree day thatÂ 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 treatedÂ 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 wasÂ meeting Phil in personÂ and getting a hug from him.Â HeÂ 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,Â brought awareness to rare diseases, and raised money for the undiagnosedâ€¦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 asÂ family!