Chiari malformation is not only a mouthful to say, but it’s also a condition that not many people are familiar with. It causes brain tissue to extend into the spinal canal, which can bring about neck pain, unsteady gait, dizziness, numbness/tingling in the hands and feet – and more. There’s currently no cure, so people living with the condition often have to undergo multiple surgeries to manage it.
Alex, a fourth-grader from upstate New York, started having issues with his balance and horrible headaches when he was just three years old, one year after he was diagnosed with Chiari malformation. He was in so much pain that “he would dig his head in the couch and cry himself to sleep,” explained his mom, Ashely R-M. It was that year that Alex had his first decompression surgery, where doctors took out part of his skull and removed a vertebra. But the procedure was not successful and Alex’s symptoms returned ten times worse than before. Since then, Alex has undergone an additional decompression surgery (which was successful), had 24 shunts put in to deal with spinal fluid and one spinal fusion.
If you met Alex, you would forget about all of this. He’s an incredible nine-year-old who enjoys music, painting, Pokemon cards, reading and playing at the beach. Through all of the surgeries and procedures, his mom described the three things that carried him through: listening to music (Lee Brice and Kelly Clarkson are his favorite artists), painting (while he’s listening to music) and playing with his American Pitbull, Boston. Alex actually refuses pain medication after surgeries and instead, puts on his headphones and uses music to recover.
When Alex found out his wish to meet Lee Brice was granted by Do It For The Love, he was beyond excited. Alex and his family met Lee before the show and had the opportunity to hang out with him again on the tour bus after the show. Lee even gave Alex a guitar, which he has played every night since the concert. But what made Alex feel even more extraordinary was being invited up on stage during his favorite song where he got to play drums with the band! “I think it’s meant everything to him,” said Ashley. “Alex is at the age where he’s realizing there are many things he will never be able to do, like play contact sports or jump on a trampoline, but this wish has made him feel like he CAN do something other people can’t do. He feels like he’s part of something special now.”
Alex is currently doing well. He’s gone one and a half years without a surgery, which is the longest amount of time he’s been surgery-free since 2014. He continues to listen to Lee Brice and hang out with his two brothers. For now, he’s focused on enjoying life as a fourth-grader – a fourth-grader who has been on stage performing with Lee Brice. “Do It For The Love made Alex feel he’s different in such a positive way,” expressed Ashley. “That is something I’ll be forever grateful for.”