Illinois Fact Sheet

 

On October 15, 2017, Axel became a loving addition to Colby and Lexi’s family of four. He was a happy healthy growing boy, completing all milestones the first year of life. However, after his 2nd birthday, Axel still struggled with walking. After multiple doctor appointments and various delayed testing, the Riordans still had no answers. It wasn’t until an ER admission that Colby and Lexi were told the news that every parent fears.Testing revealed that Axel suffered from early infantile MLD. To say Colby
and Lexi were devastated is an understatement.

They have witnessed Axel losing simple abilities such as sitting up and swallowing. They know with time the progressive disease will spread, but Axel’s parents are so thankful for the support they have from their family and friends. It just so happens that a lot of their support team consists of real-life nurses, too. Also, Axel has the BEST big brother ever, Ryder, who loves him very much.

Axel’s parents find themselves heading from Illinois to UPMC, which is out of state, for specialized medical care. Some days, Lexi feels very accomplished in terms of helping Axel, while other days are just completely exhausting. She knows they have a long, scary road ahead, but no matter what, they will continue to fight for “Ax man” because he deserves it, and nothing will hold him back!

 

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