Amplifying a Message of Acceptance

This is part of our series reflecting on 20 years of Family Advocacy Day. Learn how the experience impacted our former child advocates.

These days, Peter Dankelson requires only one piece of equipment: a Gibson guitar.

As a motivational speakerand musician, Peter incorporates music into his message of kindness, self-acceptance, and the importance of looking beyond physical appearance.

Peter, left, with Anne Mervenne from the Children's Hospital
of Michigan.

The 24-year-old's needs were much different when he was a little boy. Born at 30 weeks, Peter was diagnosed with Goldenhar Syndrome, a congenital condition that causes malformations of the eyes, ears, and spine. He spent his first three and a half months in the neonatal intensive care unit at the Children’s Hospital of Michigan.

Once at home, Peter required round-the-clock care to monitor his ventilator, tracheostomy, feeding tube, and other equipment. To ensure he was constantly monitored — and his parents could get the rest they needed — the Dankelson family needed a night nurse. However, his private insurance company wouldn’t cover it.  

The family fought to get a Medicaid waiver for Peter, which began paying for the nursing care he needed when he was 2 years old.

“Families survive if they get the support they need,” Peter's mom DeDe said. “We were not surviving before we were able to get Medicaid. We were drowning.”

DeDe carried that message to Washington D.C. in 2008 when the Dankelsons attended Family Advocacy Day (FAD).

FAD is Children’s Hospital Association’s marquee advocacy event that brings patients to Washington D.C. to meet with members of Congress and their staff.

Peter was 7 years old when he attended FAD. He recalls the “All Star” cards of the child advocates; DeDe remembers her son’s impact in congressional offices.

“Receiving a letter or a phone call is not the same as seeing a family with their child with visible complex needs,” she said. “You're right there in front of them. There’s more of a connection, and it leaves an impression.”

If they were attending FAD this year, DeDe would make sure to advocate for the Children’s Hospital Graduate Medical Education programresponsible for training more than half of all pediatric providers in the U.S. “Peter had all kinds of GI issues with his feeding tube, and it was going to be four months before he could see a specialist,” DeDe said. “I worry about that.”

She also would urge members of Congress to restrict the involvement of insurance companies in medical decisions, especially when it comes to complex pediatric care. DeDe sought highly skilled surgeons for Peter’s numerous delicate facial reconstructions, which required traveling out of state and to out-of-network providers. “The patient and medical provider should be making these decisions together,” she said. “They know what is best for themselves and their patients.”

FAD suited DeDe well, as she’s always been a fierce advocate for children with complex medical needs, serving on the family advisory council at Children’s Hospital of Michigan for many years and now as a board member at the Children's Craniofacial Association. She’s glad the event is still going strong 17 years later.

“I highly recommend the experience. Your story matters, and it’s important that you are the one sharing it,” she said. “It’s an opportunity to bring attention to the importance of pediatric health care, especially for our medically complex kids.”

About Family Advocacy Day  

The Children’s Hospital Association is celebrating its 20th year of hosting Family Advocacy Day. Each summer, patients and their loved ones meet with federal lawmakers in Washington D.C. Together with children’s hospitals, we elevate their voices and advocate on important pediatric health care issues.