Sat, Jul 23|
Strong As AX Benefit
Bringing awareness to MLD and celebrating our Warrior Axel!
Time & Location
Jul 23, 2022, 1:00 PM – 4:00 PM
Bloomington, 2303 Stern Dr, Bloomington, IL 61704, USA
About the event
It’s been nearly two years since the term “MLD” became a part of our daily conversation. Two years since we struggled to keep the chip basket full enough for Axel to double fist and dip into his Mexican cheese! Two years since the Riordan house consisted of two rambunctious boys jumping and running through the house! Where the biggest concern was bedtimes, keeping the boys out of mischief and cleaning them up after a day filled with mud puddles and dirt!! MLD has robbed not only this 4yr old boy but this entire family of the milestones EVERY parent documents and celebrates! MLD….. Metachromatic Leukodystrophy Disease is a RARE, rapidly progressing neurological disorder that tragically comes crashing in with a swift decline of EVERY bodily function we take for granted daily! Axel Riordan was diagnosed at the age of 2yrs old, August 30, 2020. After months of no answers, Lexi and Colby presented to the ER in desperation seeking answers. What they didn’t realize is that their whole life would shift in this moment when this diagnosis revealed that Axel lacks an enzyme needed to support his neurological function. Therefore, he began losing all gross and fine motor skills needed for basic life functions, such as sitting, eating, and talking. Life immediately was filled with doctor appts, therapy, specialists, and the daily daunting thought….. “How do we do this?” Well, fast forward two years later, and this family continues to show up and FIGHT. Advocacy has become a daily exercise. The love and dedication shown by these two parents can NOT go unnoticed. They spend their days pouring any sense of “normalcy” to their boys Axel and big brother Ryder. Any bit of downtime has been filled with opportunities to educate their local medical teams and involvement with MLD advocacy groups such as Rare and Ready Coalition, All Stripes, NORD MLD Home Study and Passage Bio Patient Council. Our goal as a community is to raise awareness to this awful disease! Newborn MLD screening MUST become a standard of care for every child! This routine testing can successfully treat these infants and save a lifetime of pain and heartbreak. Please join us as we come together to raise funds for the Riordan Family while 20% of all proceeds will continue to be donated to The CUREMLD Foundation!
Food tickets available for purchase, auction items, 50/50 tickets, Axel merch, music and other family friendly activities!
*WEAR YOUR #AXELSTRONG SHIRT TO RECIEVE YOUR FREE "STRONG LIKE AX" CUP!*