Hadley’s #champion Year in Review:
“Hey Hadley, what do you think you want to be when you grow up?” I asked 2019 Idaho CMN Champion Hadley, as we munched on chips and salsa (that she prefers to be EXTRA spicy) at lunch. “Well, there are a lot of really cool things I could be, you know? I am still young and have a long time to choose, but I think the best thing for me is a vet. Did you know we basically have a petting zoo at my house? My sister and I always convince our parents that we need to provide a safe and loving home for any animal we come across… it’s AWESOME!”
Throughout our time giggling about how I couldn’t handle the heat of the salsa, we discussed our favorite TV shows, Grey’s Anatomy taking home the gold with FRIENDS as the runner up. “I am just really proud of Meredith Grey for being such an inspiration to so many individuals” she told me as she gulped down the BIGGEST drink of water. Little does Hadley know, she is more of an inspiration and friend to all of us than any fictional character could ever be.
Every year, 170 local Children’s Miracle Network Hospitals identify a “Champion” in each of their local communities to serve as the face for children treated at their local children’s hospital. These ambassadors spend their year advocating for the charitable need of children’s hospitals across North America. In 2019 we gained a new best friend and local hero, Hadley Alexander the most brave and beautiful 8 (at the time) year old Children’s Miracle Network (CMN) Champion! Here is her story:
In April of 2012 Marcu (Mom) and Ben (Dad) received the devastating diagnosis that their sweet, sweet Hadley was diagnosed with Cystinosis, a rare and incurable metabolic disease that slowly destroys every organ in the body. Cystinosis afflicts less than 500 children and young adults in the US, and just over 2,000 individuals worldwide.
This daunting disease is caused by the buildup of cystine in the cells which, in time, destroys all major organs of the body. Individuals with Cystinosis experience central nervous system complications, poor GI mobility, severe muscle weakness, sensitivity to light due to crystals forming in the eye and end-stage renal failure leading to dialysis and kidney transplantation.
With continued learning and understanding of Hadley’s diagnosis, Marcu and Ben developed hearts4hadley.org, a mission geared towards raising awareness to support and promote research to find better treatments and a cure for this rare disease.
- February: Celebrated Hadley with cookies from our CMN friends at Marriott, Miss Idaho stopped by too!
Meet Hadley Alexander, Idaho's Children's Miracle Network Hospitals Champion for 2019! Hadley has cystinosis, a rare,…
Posted by St. Luke's Children's on Friday, February 15, 2019
- February 22: Danced the night away with our Boise State Dance Marathon friends who raised over $208,000 For The Kids at St. Luke’s Children’s
- March: Stopped by IHOP for some DELICIOUS pancakes on FREE pancake day and supported kids all over the nation during #ChildrensHospitalWeek
Hey everyone! Children's Miracle Network Hospitals needs our help. Join us March 18-24 and show your support during…
Posted by St. Luke's Children's on Monday, March 18, 2019
- April: G-tube won’t stop the Spring Break fun!
- July: I scream, you scream, we all scream for [Blizzards]
- September: Was the star of the show at the 5th annual Hearts4Hadley event. Snapped a fabulous picture with Channel 7’s News Anchor, Mark Johnson and sister, Stella.
- October: The family did NOT do Halloween Willy-Nilly but rather, Willy-Wonka! Also, was selected as a recipient of the Respect Award at school. AND graduated from strictly using her G-Tube to successfully swallowing all 44 of her pills each day- WOOHOOO!
- December: Celebrated Giving Tuesday by visiting some of our CMN partners with previous Champion friends, Mia and Vann!
Thank you, Hadley, for being a wonderful representation and Champion of St. Luke’s Children’s and the Boise community! We are so proud of you, excited for each new milestone you reach, and honored to know you.
