They spoke volumes without ever saying a word.
When you are loved by a girl with Rett syndrome, you learn so much from them. You learn what unconditional love is, how to communicate without saying a word, how weak you are, how strong you are and how far you will go. They are lessons that test you but also teach you so much more than you could ever think you can learn.
We are running for our girls, Skylar and Kristi, who were our angels here on Earth and now they are guardian angels. Kristi and Skylar had an immediate bond when they met when Skylar was newly diagnosed, and Kristi was in her early 40’s. Such a huge age difference between them but you would never know. The 2 of them would lock eyes and you saw this mischievous look pass between them every time and now they are up in heaven doing everything that Rett kept them from doing down here.
Rett syndrome is a syndrome caused by a mutation of the MecP2 gene. Our girls and boys are usually born healthy and then between the ages of 6-18 months, a regression occurs, and skills previously attained are now gone. Our girls and boys are trapped in their bodies unable to care for their basic needs, unable to talk, seizures, breath holding, apraxia, dystonia, and hypotonia to name a few of the symptoms that come with Rett Syndrome. What is interesting is the fact that when Kristi was born in 1965, Rett syndrome was an unknown entity. We did not hear the words Rett syndrome until she was 21 years old. Fast forward to when Skylar was born in 2002 and the genetic mutation had been found and researchers were working to find out if the trajectory of Rett syndrome could be changed and it was in 2007 when Rett syndrome was reversed in mice models. Now, in 2019, there are clinical trials happening and we are closer to a cure now more than ever.
For Kristi and Skylar, they were cured the day they became angels. They are free of Rett syndrome, laughing, talking, running, dancing and knowing our girls, causing some mischief. And while we know they’re free and whole, it does not erase the hole that has been left in our hearts. It does not take away the emptiness we feel and that’s why we are running (A LOT OF MILES) over the weekend of February 2020. Some of us are running the 5k and 10k, some of us are running all 3 for a total of 22.4 miles in.3 days. We are running so no one else has to feel the emptiness of losing their angel. We are running so no one else has to say goodbye. We are running for our girls and boys to have the opportunity to run, laugh, play, talk with their families. We are running so our girls and boys can say “I love you” with their own voice. We are running for treatments, awareness, education, support and a cure.
Skylar and Kristi taught us so much and impacted our worlds in so many amazing ways. They were and always will be the best parts of us. We are learning to live our new normal without them and that means we will challenge ourselves, push ourselves and live every day to the fullest in their honor. Help us reach our goals and fund research, awareness, family support and education for those girls and boys living with Rett Syndrome.
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