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Like an ordinary kid, 7-year old Tarryn Huizar smiles at the sight of a bunny. But extraordinary pain is all that the Pittsburg boy has ever known. When he was three-months old, he contracted pneumococcal meningitis. The bacteria quickly started shutting down his brain. It will eventually fail - it's just a matter of time.
"We, along with planning a birthday party, are also planning our son's death," said Angela Huizar, mother.
But until that day, Tarryn and other children who are dying are finding comfort in George Mark Children's House in San Leandro. It's the nation's first freestanding pediatric hospice. Its unique mission is to relieve the suffering of the children and their families through medical, emotional and logistical support.
"When you walked into the front door - it would feel like a safe haven, like you're coming into someone's home," said Dr. Kathy Hull, founder.
The children are greeted by piano music played by loving volunteers; cheerfully-painted bedrooms where all medical equipment are hidden behind the wall. Some suites can accommodate entire families. There's a soothing sensory room where they can relax. And an art room where they and their siblings can focus their energy. But the hands-down favorite of four-year old Austin Rustrum is the therapeutic spa.
His mother Stacey says in here - Austin feels joy instead of pain. He was born missing some brain tissue - a complication from being a twin. Caring for him is a 24-7 commitment. Stacey says George Mark's respite care allows her to be a mom to her two other children.
"It's kind of nice, he can come here and we can do things with our other kids so they don't feel so left out of our family," said Stacey Rustrum, mother.
The families say they don't worry when the kids are here - thanks to a team of doctors, nurses and volunteers. There's also counseling, and when the times comes - the opportunity to grieve. Parents make tiles to remember their kids. And the staff carves the children's names into stones surrounding an eternal fountain. But this place and everything it offers may be going away. Many of George Mark's donors have cut back on their financial contribution in this difficult economy. Without a major influx of new funding, this hospice may have to shut its doors, in as little as two months.
Dr. Hull's family provided the seed money to build the place five years ago as a memorial to her two brothers who died young - George and Mark. No one is turned away because they can't pay and operating costs are $500,000 a month. Even though Alameda County is essentially providing the land for free - George Mark's own time may be running out.
Tarryn's mom says she just can't imagine not being here - when her son finally says goodbye. "You want to be surrounded by people who love you, who care about you who could support you. Who have been on the journey with you and George Mark has been on the journey with us - they're everything," said Angela Huizar.
George Mark receives no federal funding, and minimal state and insurance money. It's almost completely sustained by donors.
If you would like to help, please click on:
www.georgemark.org
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