Meet Alex: 2018 Family Advocacy Day Champion

Alex is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Alex will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

Alex bravely reaches towards the future. Though his parents feared he might not survive his early years, Alex has faced his medical challenges head on and learned to prosper in spite of them.

Like his sister, Maddy, Alex has mitochondrial disease; he also has been diagnosed with adrenal insufficiency, immune deficiency, dysautonomia, chronic intestinal pseudo-obstruction and pancreatitis.

Due to these serious conditions, Alex’s care is very complex and ongoing. He requires major interventions to remain stable and his medical status changes frequently.

Alex sees 12 specialists and has spent significant time admitted to Cook Children's Medical Center. Without the specialized care offered at Cook Children’s, Alex may not have survived.

At Cook Children’s, Alex has developed a special relationship with Sonny, the hospital’s director of clinical performing arts. Alison, Alex’s mom, explains, “Alex and Sonny have a very special relationship. Sonny has taken Alex under his wing.

He spends time teaching him violin, but also they just talk. Alex trusts him and opens up to Sonny about the struggles he faces.” Thanks to the guidance provided by Sonny, Alex has become an avid actor and violin player.

Because of his serious medical complexity, Alex receives health insurance coverage through Medicaid. This coverage has been vital to ensuring Alex has access to the care he needs, and that Cook Children’s has the resources it needs to treat Alex.

Alex has a positive outlook on life, and an amazing sense of humor despite his health struggles. Even though his medical needs make some activities complicated, he still enjoys playing video games, acting, golf, violin and his church youth group.

Join us in welcoming Alex to 2018 Family Advocacy Day!


Showing 1 reaction

commented 2018-06-12 11:38:13 -0400 · Flag
This is incredible!