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‘Darth Vader’ Boy Who Had 12 Heart Surgeries to Meet with Congressional Leaders: ‘I Can Be the Face for Healthcare’

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Max Page and his mom, Jennifer 
Children’s Hospital Los Angeles

The pint-sized Darth Vader who captured hearts in a popular 2011 Volkswagen Super Bowl commercial is now advocating for better child health care policies.

Max Page, 12, was diagnosed with a rare congenital heart defect called Tetralogy of Fallot at birth and has gone through a dozen heart surgeries. Since appearing in the adorable ad six years ago, he has used his platform to emphasize how pediatric specialty care for his heart has enabled him to live an active and normal life. 

“I hope that I can be the face for healthcare and show them that kids have health problems and that we didn’t do anything to deserve this,” Max, who wears a pacemaker and has an artificial pulmonary heart valve, tells PEOPLE. “It just happened to us.”

On July 12, he will travel to Washington, D.C., representing Children’s Hospital Los Angeles at the 2017 Speak Now for Kids Family Advocacy Day. The event brings in 47 young patients from around the country to meet with congressional leaders to speak about child health care policies that benefit children’s hospitals.

“It’s important to share stories,” says Max. “I want the Senators to put a face to children’s health care. I tell them my story, what surgeries I have had and how much I needed my doctors now and in the future.”

The eighth grader’s rare disease requires lifelong care — making this year’s advocacy day especially important. When Max was hospitalized for 32 days in January for endocarditis, his family relied on a largely Medicaid-funded supplemental insurance program through California Children’s Services.

“Our message to Senators is to save Medicaid for kids… We have to come to the table to get some sensible health care for kids and families. I don’t want Max worrying about how he will get care when he’s an adult because this is a lifelong condition for him,” Max’s mother, Jennifer Page, tells PEOPLE. “We want Max to be able to get his own insurance one day and be able to take care of himself.”

Adds Max: “If the funding gets cut, there might not be the care there for me and other kids — it’s always in the back of my mind.”

Max and his mom Jennifer meet with (left) Paul S. Viviano, president and chief executive officer, Children’s Hospital Los Angeles, and Calif. U.S. Congressman Tony Cardenas – D 29th district
Children’s Hospital Los Angeles

This is Max’s sixth year traveling to D.C. to advocate on behalf of the cause, but with potential ramifications of recently proposed Medicaid cuts he’s studying up on current events in preparation.

“I may get asked about the Senate and House bills, so I have to brush up on those,” he explains. “So I talk to my mom and we go over questions that will be asked and I learn who I am going to talk to, it’s cool because I’ve gotten to meet a lot of legislators in Washington.”

Max says some of those people have included Congressman Adam Schiff and Attorney General Jeff Sessions and his wife Mary Blackshear Sessions.

“When I spoke to them they listened to me,” says Max. “We even went with Mrs. Sessions to get frozen yogurt in the Capitol building! We have a strong relationship and they send photos to me from Capitol Hill.”

Max’s parents, Jennifer and Buck Page, are extremely “proud” of their young son’s advocacy work.

“He never feels sorry for himself, it’s never ‘Why me?’ even though he always has to think twice about his health,” says Jennifer. “As he becomes a teen and takes responsibility to monitor his own health and future, we are just so proud.”