Run for Someone You Love
by Ryan House
Every year since sweet one-year-old Connor (aka King Con) passed away at Ryan House from a rare genetic disease, parents Zach and Ashley Crowell along with his big brother, Kellan, recruit their friends and family to join “Team King” in support of the Run for Ryan House in his memory.
Read below to learn more about the Crowells’ beautiful Ryan House journey (as told by Ashley) in hopes that you too will be inspired to sign up on your own or recruit your friends and family and create your own team in honor of a loved one for the Run for Ryan House on Sunday, Nov. 17 at Kiwanis Park in Tempe.
A few years ago, my husband and I, holding our baby boy Connor in our arms, heard the worst words any parent can hear.
“It’s the end. You need to prepare to say your goodbyes.”
We spent the next 18 days doing just that – showering him with love and making memories that we will always cherish.
During the worst moments of our lives, we were surrounded by the love and care of Ryan House. It was a position we never expected to be in, and one that no parent could ever prepare for.
Only a few months prior, we were a normal family and enjoying Connor’s first year of life.
When Connor was born, all signs pointed to him being a perfectly healthy baby. However, at six months old, he started experiencing very serious health issues. Connor regressed in his milestones and was experiencing very painful muscle spasms, which ultimately caused us to seek out immediate help.
At eight months old, we learned the devastating news that he had Krabbe Leukodystrophy, a rare, degenerative disease affecting his brain. Connor wouldn’t make it to his second birthday, doctors told us.
We learned about Ryan House only days after the diagnosis. It took me weeks to muster the courage to go, and when I did, I was overwhelmed with the sense of love and comfort. I noticed the background noise of laughter and a glimpse of relief on other parents’ faces. We immediately knew we needed the support and care of Ryan House not only for Connor, but for our entire family.
Incredibly, we had so many happy memories at Ryan House. It was at Ryan House where Connor got to ride down his first slide, make music and experiment with arts and crafts. I can’t explain the joy I felt as a parent to see Connor experiencing moments of being a normal child.
We had the idea to throw Connor an early birthday party, and the Ryan House nurses and staff mobilized quickly, bringing in balloons, cake and gifts for a family celebration we’ll cherish for a lifetime.
Between Connor’s diagnosis and his final day was only six weeks. However, our beloved final memories of Connor are undeniably intertwined with Ryan House and forever held in our hearts.
I encourage you to consider supporting Ryan House for the mothers like me, who are blind sighted by a terminal diagnosis and are completely overwhelmed. Without Ryan House, the final six weeks of Connor’s life would have been consumed by worry, devastation and utter sadness. While I did experience these emotions, I also had the opportunity to enjoy moments of joy, happiness and true love. I wouldn’t have experienced that without Ryan House.
Your support will mean the world to families like mine. We hope to see you at this year’s Run.
With love and gratitude,
Join us at Kiwanis Park in Tempe on Sunday, Nov. 17 to assist in our mission to continue to provide world-class care and programs for the medically fragile children and families we serve as they navigate life-limiting or end-of-life journeys.
Event highlights include:
-Runners, walkers, wheelchairs, strollers, dogs, teams & virtual runners welcome
-Shirt, bib, goodie bag, and a participation medal
-Race Expo and awards ceremony
-Sign up to create your personal fundraising page
-New friends and great memories!