What does it look like to take on a challenge as a family? The Spearman’s are a great example of when you do hard things together, an impact is made that is larger than yourself. They are not only making a difference in the Prader Willi Syndrome (PWS) community but also the Upstate community. Thank you Gwyn and Ellie for letting us share this small piece of your amazing family’s story.
“About a month ago Dr. Miller, Ellie’s Endocrinologist and PWS specialist, challenged her to complete a 5K with her.
Lately Ellie’s energy levels have been zapped. She’s always fatigued quickly, but recently it’s been a lot harder. Combine that with low muscle tone and it’s pretty much a nightmare…thanks PWS.
Ellie agreed to the 5K, and you just don’t let Dr. Miller down lol. Honestly, I didn’t know how on earth she’d complete it, but that’s the resilience I see over and over again with individuals living with PWS. We adjusted some medicine, committed to walking 5 nights a week (when you have a Marine for a dad you meet challenge head on and overcome it, no excuses), and made the trip to Florida happen so she could do the 5K.
And yesterday she did it. Mile 2 nearly broke her, but she pushed forward one shaky step at a time and crossed that finish line, and received her medal. We might have been nearly the last ones completing the 5K, but that’s absolutely ok. It’s honestly what I’m learning about this PWS journey…it’s never going to be how fast you do anything. It’s more about completing the task, and that will look different for every person. You adapt, regroup, find encouragement, look for the good, and finish what you start…and it doesn’t matter how long it takes you. You finish.
Ellie battled PWS yesterday. She battled herself. She battled fatigue. She battled low muscle tone. She battled the Florida heat. She battled giving up. She battled frustration. And she WON.
Everyone needs a Dr. Miller in their life to love you like she does. Thank you for challenging us right when we needed challenging, and thank you for loving our girl like your very own always 💕
Huge congratulations to Kelly Shad Guillou and her awesome team on an amazing event yesterday! Thank you for letting us be a small part of it, and thank you for being there to see our girl get a huge win.”
How can you learn more about the Running for Research? Click here for more information.