“The bumps in the road
on the way to your dream
are there to test your tenacity.”
|BIOGRAPHICAL VIDEO||2009 MINERVA AWARD WINNER SPEECH
Kathy Hull founded the George Mark Children’s House in San Leandro, CA, the first freestanding residential pediatric palliative care center in the United States, because she believes that all dying children and their families deserve a sanctuary as they endure one of life’s most excruciating experiences. While the vision for this15,000 square-foot San Leandro “home” was born from personal family tragedy, every detail of its execution reflects a sense of love, warmth and support Hull wants people to know as they struggle with the loss of their own young life or that of their child’s.
With Dr. Barbara Beach, a pediatric oncologist, Hull started the house in 2004, acutely aware of the devastation a family faces from the loss of a child. The house is named for two of her brothers. Mark died in 1962 in an automobile accident at the age of 16, George in 1969 from cancer. In both cases, she remembers how ill-equipped her family was, as when George was critically ill to navigate the medical system during crisis. Certainly no one prepared her parents or siblings for the loss and grief they all eventually shared through death.
Before Hull created George Mark Children’s House, the only options in the United States for dying children were a hospital room, the family’s home, or nursing homes geared for adults -- all settings that in different ways can be daunting to the surviving family, and most particularly to dying children themselves.
Hull, a clinical psychologist, and her colleague Dr. Beach saw firsthand how badly families needed an alternative: a supportive environment in which every family member’s medical, emotional and spiritual needs could be met as they faced this toughest of life’s trials.
Hull’s first decision was to take on “the look” of her facility. She engaged an architect to design a beautiful, airy California ranch style house, then landscaped the surrounding 5 acres of untended county land into an oasis of lush trees and flower beds. A small, non-denominational chapel sits on the top of a hill where services are held in honor of the children who have died here. The bedrooms have brightly colored murals. There is a spacious playroom, a computer game room, family suites, eight patient rooms and a large open kitchen called Ruth’s Café where family and staff eat together. In the George Mark Room, families can stay with their child after her/his death and say goodbye over a period of days if that is their choice. Counseling to help cope with a loss of a child is provided free for as long as a family needs it. This is a place that understands the need for community during a time of crisis.
Children who come to George Mark have progressive, incurable diseases that will likely take their lives before they become adults. But Hull says the stories of those children and their families are not just about hardship and tragedy, rather they are more about the celebration of life and the power of love.
Each year, over 200 families call George Mark their temporary home. Some families come for respite care, a break from the rigors of caring for their seriously ill child. But hospice care takes precedence. No child is denied care because their family is unable to pay.
“Before us there wasn’t any choice. We’re the 'in-between place' that lets parents either get comfortable knowing they can provide the care their child needs at home or be with us where they know whatever decisions they make are being supported,” Hull says. Our country needed a model for residential pediatric palliative care, and thanks to trailblazing example of Kathy Hull and George Mark Children’s House, there is one.