Defying the Odds: Patient Family Travels to Nation’s Capital to Advocate for Kids

Thursday, Jul 12 2018

Jaden Advocacy Day

Eight years ago, Jaden Brown suffered a stroke at birth which resulted in Hydrocephalus, an incurable condition where fluid builds up deep within the brain, and subsequently had brain surgery at just four months old. His parents, Christina and Roy, were told he’d likely never be able to walk or talk. Today, 60+ trips to Children’s Hospital Colorado and eight years later, Jaden is doing just that, and so much more.

Thanks to his family’s perseverance, his dedicated team of Children’s Colorado providers and his unbreakable spirit, Jaden has defied the odds—he now rides a bike, tells you how much he loves math and science, cheers for the Denver Broncos and last month, joined us in Washington, D.C. to share his story with lawmakers.

Jaden is at risk for having shunt failure due to Hydrocephalus and is an ongoing seizure risk due to the stroke he suffered. He’s also been diagnosed with cerebral palsy, cortical vision impairment, asthma, severe allergies to more than 30 foods and environmental triggers, anxiety and sensory processing disorder. He sees 10 different pediatric specialists at Children’s Colorado, logging over 40,000 miles driven over the past eight years, and engaging with healthcare providers via telehealth in between visits.

Jaden’s parents have relied on Medicaid to cover the additional costs of Jaden’s healthcare visits, medications, medical equipment and therapies.

Putting a face on public policy

Each year, the Children’s Hospital Association convenes government affairs staff from children’s hospitals with patients and families from across the country in Washington, D.C. This two-day event, Speak Now for Kids Family Advocacy Day, aims to raise awareness of kids’ health issues with lawmakers and to ask them to do what’s right for kids in public policy.

At Children’s Colorado, our Government Affairs team speaks up clearly and powerfully for kids’ needs in public policy at the local, state and federal level. And we know one of the most effective ways to influence lawmakers is to share the stories of how laws and policies affect the kids and families they target. That’s why we were thrilled to attend this year’s Family Advocacy Day, accompanied by Jaden, a Children’s Colorado Ambassador, his mom Christina, his older brother Micah and his grandma Irene, to share their story with our U.S. Senators and Representatives.

Planes, trains and automobiles

After a seven-hour drive from their hometown, Durango, the Brown family joined us in Denver for an adventure to our nation’s Capital. As leaders and members of Colorado’s Pediatric Hydrocephalus Foundation, the family has already been to Washington multiple times to speak up for Jaden.

“We’ve been to DC five times so far, and we’re going to keep coming back to ensure lawmakers hear Jaden’s story—not only on behalf of our son, but on behalf of all kids like him,” says Christina.

One delayed flight and eight pieces of luggage later, we made it to Washington, joining 40 other children’s hospital patients and their families. Our first day together was spent exploring the city via bus tour, with a memorable stop at the Smithsonian’s National Museum of American History, where Jaden and Micah got to see “the real Batmobile,” along with plenty of historical trains and automobiles.

The day ended with a patriotic dinner celebration for the families, complete with live music, face painting, arcade games, photo booths, caricatures and an in-person visit from superhero favorites like Batman, Superman, Ant-man and more. Jaden even got to kiss Wonder Woman on the cheek—to which he exclaimed, “This is the best day of my life!”

“Pay the bills!”

After a fun-filled first day, the second day of the trip consisted of seven meetings with the offices of Members of Congress—Representatives Scott Tipton (R-Cortez), Mike Coffman (R-Aurora), Ed Perlmutter (D-Golden), Ken Buck (R-Greeley), Diana DeGette (D-Denver) and Senators Cory Gardner (R) and Michael Bennet (D).

During these meetings, we shared Jaden’s story—detailing the impact that Medicaid has had on his ability to do more than doctors initially anticipated. We also advocated for the Advancing Care for Exceptional (ACE) Kids Act, which would improve care for children with medical complexity, and the reauthorization of the Children’s Hospitals Graduate Medical Education program, which strengthens federal support for vital pediatric medical residency training programs.

Christina and Irene emphasized to lawmakers that Jaden’s disability isn’t temporary—he will require special care and treatment for the rest of his life, further demonstrating how critical it is that there are programs in place to support him now and into the future.

Wearing matching dress shirts and ties, Micah, the caring and protective 11-year-old brother, told lawmakers, “We’re asking for your support so kids like Jaden can live and thrive.” And Jaden, full of personality yet soft-spoken and kind, chimed in that “he hopes he can help other kids feel brave, too.” And when Representative Coffman asked Jaden if there was anything else he wanted to tell him, the playful and goofy side of Jaden came out to reinforce the importance of Medicaid as a lifeline for kids, exclaiming, “Yes—pay the bills!”

A continued journey

As we parted ways at the airport, there was an unspoken consensus that our journey together wasn’t over.

For Jaden, his journey as a Children’s Colorado Ambassador and a role model for kids will continue inspiring others to be brave. Micah’s mission as his brother’s best advocate is far from over. Christina and Irene’s fight to ensure Jaden receives the best care possible will be a lifelong commitment for them both.

And here at Children’s Colorado, our mission to improve the health of children means we will continue to speak up for policies that help keep kids out of the hospital. And although our trip to Washington with the Brown family lasted only a few short days, our partnership with families to advocate for the millions of kids like Jaden will stretch far into the future.

To keep up with the latest in child health policy and get involved in speaking up for kids like Jaden, sign-up for our Child Health Champions grassroots network. And to donate to Jaden’s fundraising page, click here

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