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What's Up Wednesday -- Alex

#WhatsUpWednesday is our chance to hear from the teens and young adults who are involved with the Speak Now for Kids community. This week’s post will focus on 14-year-old Alex from Cook Children's Medical Center. 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. Medicaid 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. Even though his medical needs make some activities complicated, he still enjoys playing video games, acting, golf, violin and his church youth group. You may remember Alex from his participation in this year’s Speak Now for Kids Family Advocacy Day.

So Alex… what’s up?

Why I advocate So I can help other kids like me.

My favorite moment from the 2018 Family Advocacy Day Getting to see and talk to the people who make decisions in our country.

What my children’s hospital means to me Everything! They take good care of me and make sure I'm happy.

What I want the world to know about my condition Having mitochondrial disease makes it hard to do most things everyone does and it’s incurable. 

What makes me unique My positive attitude even though I get really sick. 

What have I overcome Death. 

How do I plan to give back to the world I’ve started by fundraising for my hospital and volunteering with my church.

What do I want to be when I grow up A doctor.

My favorite subject in school is science because it makes sense and it’s fun. 

What I’m excited about the most for the upcoming school year Spending time with my sister and my friends.

 

Didn't see Alex's original Speak Now for Kids Family Advocacy Post? Just click here


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