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Rare bone disease puts young girl in fight for her life

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Ava Ramirez, left, holds hands with her mother, Andrea Ramirez, at Family House in San Francisco on April 15. (Emma Chiang/Special to S.F. Examiner)

“What makes me special is my bone disease,” said 10-year-old Ava Ramirez.

Living with the daily reality of her mortality, Ava’s sassy, cheerful smile and curiosity for life have not ceased. At age 5, she was rushed to the emergency room when she completely broke her right tibia and fibula. There, doctors diagnosed her with a rare bone disease called osteopetrosis. Otherwise known as “stone bone,” the terminal disease results in the hardening of bones, making them more prone to fractures and breaks.

Andrea Ramirez, Ava’s mother, decided to pull her daughter out of school due to the dangers of being surrounded by other children unaware of her condition. A single mother, Ramirez has been caring for all three of her children with the help of her mother and uncle, while homeschooling Ava in between hospital visits.

“I have to keep going for my kids they need me,” Andrea Ramirez said. “I fear the worst, not having her here, I can deal with the wheelchair, appointments, surgeries, but not having her here is the worst.”

In December, Ava was transferred to UCSF Benioff Children’s Hospital to receive a stem cell transplant, in hopes the new cells would replace her excess bone cells. While she was receiving treatment, the Ramirez family relocated from their home in Sacramento to Family House, a free home for families of children undergoing long-term care for life-threatening illnesses in San Francisco.

Family House was founded in the 1970s, when doctors began developing better ways to treat cancer and other terminal illnesses, according to Family House CEO Alexandra Morgan.

Anna Lark, a Family House service coordinator, built a close relationship with Ava while she stayed at Family House.

“Ava brings a positive attitude to life,” Lark said. “She is going to have a better understanding of how to face difficult situations because she has already faced mortality. I hope she continues to have a passion for education and the excitement to learn.”

Ava’s stem cell transplant failed and caused her to contract MRSA, Methicillin-Resistant Staph Aureus, a life-threatening bacterium that can deteriorate the skin and blood. Andrea Ramirez and her family have since endured countless stressful nights at Ava’s bedside. Ava’s disease has caused blindness in her right eye, loss of hearing and more than 57 breaks and fractures resulting in surgery to her right hip.

“Usually with her disease, they are able to live until their 30s — that is, if there are no major complications,” Andrea Ramirez said.

After living away from home for three long months, Ava and her family received good news from the nurse at UCSF Medical Center: They were told Ava could go home. On March 14, Ava and her family packed up their bags and moved back home to Sacramento, where they are now adjusting to a new chapter in their lives. They still travel to San Francisco for monthly doctor’s appointments.

 
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Ava Ramirez, 9, holds hands with her mother Andrea at Family House, a free home for families of children undergoing long-term care for life-threatening illnesses in San Francisco Calif. Friday April 15, 2016. (Emma Chiang/Special to S.F. Examiner)




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