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C-TAC Member Spotlight: George Mark Children’s House

George Mark Children’s House, located in San Leandro, California, focuses on quality of life and continuity of care for children with illnesses that modern healthcare cannot yet cure, or for those who have chronic medical conditions. George Mark, is the first independent PPC House in the United States offering palliative care to children, teens and young adult up to age 25. The organization supports patients and their families at all stages of their journeys by offering: respite care, transitional care, end of life care, perinatal care, and ongoing bereavement support.

To spotlight the organization’s work, Joan Fisher, M.D., Ph.D, the Medical Director of George Mark Children’s House, shares the story of their patient, Charlie.

Pediatric palliative care is both different from and alike adult palliative care as is illustrated in the life of our patient, Charlie. Charlie, now age 22, has received care from George Mark Children’s House since he was 6 years old.

Charlie grew up knowing that he would die one day soon. He heard it and felt it with each admission to the hospital.  Charlie was adopted by parents, Kathy and Joe, who love him and strive to make each day his best day. No one has ever diagnosed Charlie’s disease, yet Charlie, his parents and medical providers have always been acutely aware that his nervous system does not function as it should. Charlie’s arms are partially paralyzed and the other muscles in his body do not always work well; he has frequent respiratory infections, and needs help with all the tasks of daily living.

Being Charlie, with great resilience and joy, he learned to do many things with his feet. From my own hard-won experience, I’ve learned that if you challenge Charlie to an on-line video game you will be humiliated!

Charlie first came to George Mark in 2004 when our doors opened, and he and his parents continue to utilize respite care, which provides them with much-needed breaks. Charlie believes that the House is his “Club Med.” He takes full advantage of all our special services for children with chronic health issues. He does aquatic therapy, horticultural therapy; and works with our Child Life Specialist and our volunteers to play with abandon and push the limits of his world to increase his potential and make everyone his friend, as long as you play by his rules. 

Charlie quite literally has grown up with GMCH, and we with him. He taught us the value of respite care for children and their families: even with an unknown neurological disease, you can live every moment of your life to the fullest when you are surrounded by people who care about you and are trained to help you with your special needs. And, having a community of friends with complex medical issues and who risk dying each time they enter a hospital makes Charlie feel less alone. 

Charlie yearns for all the experiences that anyone of us would. His mother, Kathy, told me that he had surgery to correct the contractures in his hands so that when he had his first girlfriend, he would be able to hold her hand. The hope and optimism in that one statement transcends the harsh reality of his life. I have such respect for the parenting, love and care that has gone into helping Charlie become wonderful man he is now. 

Patients, like Charlie, who live with illness, and an awareness of a shortened life-span, need to experience as much of a normal childhood and life-cycle as possible. Our patients’ parents are our partners as we care for their children, and if we are doing our job, they should feel our respect, care, and support. Ideally, we build relationships with children and their parents over time, and we can be a trusted source of medical and emotional support at the end of their child’s life.

We hosted an event in 2018, and Charlie agreed to speak about planning for his death.  His reflections on his death are, in part, informed by his watching a friend die in peace and being comforted by this revelation. Charlie has decided he wants to die at George Mark because he knows that he is loved and cared for here. Moreover, he knows that the care his family receives from George Mark will transcend his dying and that they will be well once he is gone. Charlie’s memory will never die as long as there is George Mark Children’s House where, like all of the children we serve, he will always be remembered and cherished.

To learn more about George Mark Children’s House, visit their website here.

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