On February 5, 2023 - just under a month from now - I will be running the Surf City Marathon in Huntington Beach, CA. The run is 26.2 miles and my goal is to raise $100 per mile to benefit the International Rett Syndrome Foundation. Please read on to find out what inspired me to raise funds for this foundation.
In 2022 my husband & I started to discover some developmental delays in our beautiful son Hayes, who was 8 months old at the time. This led us down a long and winding path of medical appointments and therapy, and while we have determined that he has Hypotonia (low muscle tone), we are still searching for a diagnosis on the root cause. There is a lot I could say about this journey, it has been beautiful and painful and so many many things all at once. But overwhelmingly it has taught me one of the hardest lessons in life that I believe there is to learn: acceptance. There is faith, there is moving forward despite unknowns, there is much prayer... but at the end of the day, peace comes with acceptance.
So knowing this about me and my family, you might ask "Why Rett syndrome if you don't have a diagnosis for your son?"
HERE'S MY WHY:
It takes a village to raise a kid, and it takes an army to raise a kid with any type of disability. When my husband & I first started filling in the gaps on our son's developmental delays, it was an extraordinarily overwhelming prospect. There is no road map, and no guarantees for what it might mean. There are over 9,000 causes of Hypotonia ranging anywhere from terminal to inconvenient. And you never know until you know.
While we were in the throws of sorting out all of the emotions around what was happening and how to navigate it, I started searching out community - specifically, other parents who may be in the same boat as us. Eventually I would land in a wonderful online community that has given us so much direction and encouragement. But before we got there, an amazing mom who I have known since high school reached out to me and offered not only her empathy and her support, but also her solidarity. She is the mother of an amazing girl with Rett syndrome. Rett Syndrome is a rare genetic neurological disorder that leads to severe impairments - severe hypotonia is among them. During some of my darkest emotional moments, it was her words and her remarkable perspective that quite literally changed my entire outlook on what we were going through. She genuinely shifted me from, "why me?" in the more gloomy sense to "why me?" in the 'what did I do to deserve the privilege of raising this beautiful boy?' sense.
Community has been everything for me, and this one mom in particular really made a huge impact. I wanted to say thank you to her in a meaningful way. With her permission, I decided to start a fundraiser in her honor benefitting the International Rett Syndrome Foundation.
A LITTLE BIT ABOUT THIS FOUNDATION:
Not only do they assist families with resources, securing equipment and connecting with others who have a Rett diagnosis, but they also pour funding into research going "all in for a cure" in their own words. It was their funding that was critical in the research of discovering what gene mutation causes Rett, which is crucial for finding a cure. They are also funding the first ever gene therapy trial for Rett beginning this year. You can read more about the amazing work they are doing at their website: https://www.rettsyndrome.org
So to you, Amy, thank you for being a mom in our corner and cheering us every step of the way. Thank you for bringing perspective and light and beauty to our journey. Thank you for the ways you share your daughter and her light with the world. You are quite literally changing it. I hope whatever comes of this fundraiser helps move the needle towards more therapies, and maybe one day a cure.
Please note that all donations are tax deductible and go straight to the International Rett Syndrome Foundation. I will not be handling the funds in any way, I am only providing a channel to donate to this amazing foundation.
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