Making It Real: Families Share Stories with Lawmakers

Patients and families met virtually with legislators and their team members to share their personal stories and underscore the importance of Medicaid funding to meet their children’s critical medical needs.

A photo showing how families met virtually with legislators for 2020 Speak Now For Kids Family Advocacy Week, organized by the Children’s Hospital Association.

“Hi, Senator Rubio! I’m Ari!”

Eleven-year-old Arianna is not at all shy. Certainly not too shy to charm a senator on a video call. She’s perched happily between her mother, Rachel, and grandmother, Abi.

Five-year-old Hudson is on the call with his mom, Melissa, as well. He lifts his head of thick, blond curls and delivers a megawatt smile to the faces smiling back at him on the screen.

These remarkable families recently represented Johns Hopkins All Children’s Hospital during 2020 Speak Now For Kids Family Advocacy Week, a special event organized by the Children’s Hospital Association. It was a rare chance to meet (virtually, this year) with legislators and their team members, to offer personal stories, and to underscore the importance of Medicaid funding to meet myriad critical needs for their kids.

“I just want to hear from you today,” Rubio says. “I know it’s been a tough year. You already have so many challenges, and now with COVID…”

It’s true that most people have no concept of what a typical day is like for families caring for a child with complex needs, or how those needs can devastate a family’s finances.

Throughout the week, the families shared their medical journeys — not only with Rubio, but also with Rep. Charlie Crist, as well as members of Sen. Rick Scott’s team.

Arianna’s mom explained that Ari was born with spina bifida and hydrocephalus. She contends with epilepsy and paralysis. She has come such a long way, but hers is a long road. She will soon undergo her 17th surgery. Before long, she will need a power chair to help her move around in the world.

“We are so thankful for Johns Hopkins All Children’s,” Rachel says. “They have been absolutely phenomenal. … Their care team, everybody goes above and beyond.”

“And we are grateful to have Medicaid,” says Ari’s grandmother, Abi. “With the surgeries, the equipment, the daily medications, the diapers, the catheters, things like that, it would be bankrupting without this funding. So, we want to say thank you.”

Hudson’s mom shares that he was born with a brain anomaly called agenesis of the corpus callosum. Hudson is tube-fed, non-verbal, and not able to walk. He also has hydrocephalus and epilepsy. His medications to control his epilepsy cost $3,000 a month. His therapies — $4,000.

“He’s super happy all the time,” Melissa says. “He does go to Johns Hopkins All Children’s four times a week for therapy, and we are so thankful for their care.”

“Our two families shared their stories and experiences with such passion and sincerity,” says Kimberly Berfield, vice president of Government Relations and Community Affairs. “They offered a clear understanding for our delegation members as to why Johns Hopkins All Children’s is a unique and critical resource within our community.”

And while a video call may not be as ideal as an in-person meeting on Capitol Hill, the families who participated felt it offered its own form of intimacy.

“One really neat thing about the Zoom call was you got to see each person face to face,” Abi says. “You could communicate with each person on the call.”

Melissa found it gratifying to meet other families who were participating in this special week as well.

“I felt like we immediately formed our own fantastic family, bonded by our children and similar backgrounds,” she says.

It is no easy task communicating the scope of such need in a few brief, friendly calls. The hope is that elected officials — those with the power and influence to impact the lives of children who’ve been through so much — will remember a child’s smile or perhaps a bit of their personal story when they are challenged to make the hard choices — choices that can make all the difference.