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Teen patient taking on Washington

Local teen with inoperable brain tumor to meet with national lawmakers; advocate on behalf of children’s health

Anna-Maria Beck, a 17-year-old Sacred Heart student, is going to Washington, D.C. on behalf of children facing serious illnesses.

On June 22, Anna-Maria and her family will travel to Capitol Hill to meet with lawmakers about new legislation, including the Advancing Care for Exceptional Kids Act of 2015 (ACE Kids Act), which would make it easier for kids on Medicaid to get the health care they need. Here’s Anna-Maria’s story:

I was diagnosed with an inoperable brain tumor on Feb. 27, 2007, when I was 7 years old. I’ve been fighting this tumor ever since. I’ve had 12 brain surgeries, proton beam radiation therapy and been through seven rounds of chemo (I’m currently on my eighth). In the last nine years I’ve been in treatment way more often than not, including many hospital stays in Louisville and Boston. It’s been rough, but I stay positive and try to look on the bright side of everything.

One positive I’ve discovered through cancer is my passion to help others. While I was finishing my second round of chemo I decided to throw a bake sale to support my clinic. I planned it in only five days and I raised over $8,000 – people kept buying cookies!

Since starting high school, I’ve mentored a younger patient as she dealt with a terminal diagnosis, done art projects with kids in the clinic and fed families at Norton Children’s Hospital through my work on the Youth Advisory Council.

Now, I’m extremely excited to take my passion for helping patients and their families to the national stage as an ambassador on behalf of Norton Children’s Hospital. I’ll have the opportunity to share my story with some of our country’s most powerful leaders. As they push their legislative agendas, I want to make sure they keep sick kids at the forefront of their minds.

I have a unique perspective to share because I started at my hospital as a little kid and I remember what it was like. Now I represent the perspective of a teenage patient. I’m SO excited to share my experiences and be a voice for not only kids in Kentucky, but across the nation.

Since being diagnosed almost 10 years ago, I’ve felt incredible support everywhere I go. My entire community has been amazing and encouraging every step of the way. I’ve become so close to the doctors and nurses who take care of me. I’m even close to the MRI techs and the admitting people. Everyone there is so nice and kind. It’s not just a job for them, they truly care.

I can’t wait to make my mark on Washington. I’ve been so fortunate to receive remarkable care, and I want to make sure all children have the same opportunity.

Follow Anna-Maria’s journey on Twitter and Snapchat (@KCHJustForKids ) and Facebook, Norton Children’s Hospital.

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