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Alex Beckwith knows Cook Children's like the back of his hand. Diagnosed with mitochondrial disease at 3 years old, he has spent hundreds of days at the medical center. Despite the challenges of his disease, Alex channels his energy toward inspiring other children. This year, he is a champion for Children's Miracle Network (CMN) Hospitals.
Mitochondrial disease is a chronic, genetic condition. It can exist in your cells and organs and the symptoms are different in every person. It is a progressive disease and currently there is no cure. In Alex's case, his kidneys are the only organ not affected.
The disease makes it difficult for Alex's body to convert food and oxygen into energy. He cannot eat by mouth and instead, he receives nutrition through a feeding tube and port. His treatment involves 38 doses of medication daily, and more whenever he is sick. Every illness Alex encounters is potentially fatal. But, Alex doesn't let any of this stand in his way of sharing his story with others.
Every year, CMN Hospitals nationally recognizes a child with a remarkable medical story from each state. These champions represent the millions of children treated at CMN Hospitals, like Cook Children's, every year.
As a designated champion for CMN Hospitals, Alex and his mom, Alison, speak at many CMN Hospitals and Cook Children's events to encourage other patients and families who are facing similar challenges.
"For Alex and me, we can see how CMN Hospitals make a difference at Cook Children's," Alison said. "We know how important it is. He is as invested as I am in making sure that we help spread the word about the program however we can."
Alex's favorite CMN Hospitals' event is Extra Life. Participants fundraise year-round and pledge to game for 24 hours, whether it's video games, role playing games or lawn sports. The one goal is to save and improve the lives of sick and injured kids. Alex chose to play video games for 12 hours last year and the money he raised went back to Cook Children's.
One of the ways Extra Life and other CMN Hospitals programs benefit Cook Children's patients is through the Child Life department, which Alex knows well from his many stays at the medical center. Alex says being in the Child Life Zone takes his mind of being in a hospital setting.
Alex is not just a face for CMNH Hospitals. He also participates in Man in the Hall, a weekly TV show filmed in the Child Life Zone and broadcast into patient rooms.
Recently, Alex started taking violin lessons in the Child Life Zone recording studio with Cook Children's Director of Clinical Performing Arts Sonny Burgess. When asked what Alex likes the most about his lessons with Sonny, he simply said, "everything." Sonny said he also enjoys his time with Alex and that he is a natural at learning to play the violin.
"Most people, no matter how old they are, would consider it to be a difficult instrument," Sonny said. "His technique is amazing. We get together every few weeks and we have fun. We like to visit and we like to dream big."