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| Eight-year-old diagnosed with rare disease |
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| Written by Jonathan Partridge / Patterson Irrigator / | |
| Friday, 02 May 2008 | |
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How to help Fundraisers for Nicole Ramirez and her family:
Eight-year-old Nicole Ramirez loves riding go-carts, swimming, playing softball and experiencing the thrill of roller coaster rides.  Nicole Ramirez, 8, spends lots of her time indoors since her diagnosis with severe aplastic anemia. But she and her family have received much support from West Side communities, including classmates at Bonita Elementary. Photo by Elias Funez/Patterson Irrigator They could expose her to germs. Even fresh fruit is a no-no, as it could contain certain harmful bacteria. “We used to go to Reno, to the snow — now we don’t do anything, not even go to the store (often),” said Nicole’s mother, Teresa Ramirez. Nicole was diagnosed with severe aplastic anemia in January, after contracting a milder form the month before. Aplastic anemia is a group of closely related disorders that cause bone marrow to stop producing enough red and white blood cells and platelets. Symptoms of the rare condition, which affects fewer than 1,000 people each year, include a higher risk of infections, bruising and uncontrolled bleeding. Severe aplastic anemia can be life-threatening if not treated, according to the U.S. Department of Health and Human Services. “It’s horrible,” Nicole’s father, Nicanor Ramirez, said. “(Nicole) wants to be the same as everyone else, but we can’t let her be.” The family first found out Nicole had a problem in December, when a plank on a rope swing knocked her in the back of the head and her nose started to bleed. That bleeding initially led doctors at Kaiser Permanente Santa Clara Medical Center to believe she had leukemia, but tests eventually revealed she had a moderate aplastic anemia. Teresa Ramirez said the swing accident might have saved the girl’s life by making doctors aware of her condition. Things got worse for Nicole in January, however, after she contracted an infection.  Nicole Ramirez, 8, spends lots of her time indoors since her diagnosis with severe aplastic anemia. But she and her family have received much support from West Side communities, including classmates at Bonita Elementary. Photo by Elias Funez/Patterson Irrigator “She was so skinny and pale,” Teresa Ramirez said. “(Family members) would see her and they would cry.” Nicole stayed at the hospital for close to a month and has been back several times for checkups and medication. For a while, she also was treated for typhlitis, an inflammation of part of the large intestine. So far, treatments appear to be working, though doctors warned that some of the medicines could be life-threatening themselves. Recently, Nicole’s platelet count, which is supposed to be between 150,000 and 450,000, has risen back past 100,000 after dropping to 2,000. She mostly stays in the house and does schoolwork on the computer as she recovers, though she can travel freely in areas where the air is circulating. On Thursday, she spent the morning watching movies and playing with dolls. A friend also visits her most weeks. When she leaves the house, Nicole sometimes must wear a mask to filter the air she breathes. Now, her parents are debating whether to have more children through in vitro fertilization — producing siblings who could offer bone marrow to replace Nicole’s faulty marrow, if the type matched hers closely enough. But that would cost about $20,000, family members say, and it would mean more children to look after, which would be difficult, given Nicole’s condition. Other expenses have piled up along the way. When Nicole was staying in the hospital, the family regularly spent $600 each week on gas and food alone. The family moved two weeks ago from Crows Landing to a less expensive home in Patterson, where there is less harmful dust in the air. The Ramirezes said they have been reluctant to ask for help, but people have been quick to offer support.  Nicole Ramirez, 8, spends lots of her time indoors since her diagnosis with severe aplastic anemia. But she and her family have received much support from West Side communities, including classmates at Bonita Elementary. Photo by Elias Funez/Patterson Irrigator The San Jose-based group Parents Helping Parents gave the family a $250 gas card and $100 for groceries, along with a talking teddy bear for Nicole. And Nicanor Ramirez said he has gotten lots of support from his employer, Hitachi, where workers raised money to buy Nicole an iPod and he has been given lots of time off work. Family members have received other forms of encouragement, too. Several teachers and students from Bonita have signed a guestbook on a Web site set up for Nicole, www.caringbridge.org/visit/nicoleramirez. Bonita Principal Danny Cope said Nicole, who participates in the school’s Gifted and Talented Education program, is a dedicated student and has been missed at school. “She’s very smart, very bright,” Cope said. The Ramirezes said they are grateful, and they try to repay people’s kindness. This week, they served up several gallons of ice cream to Bonita students. “It’s always good to show thanks,” Nicanor Ramirez said. To reach Jonathan Partridge at the Irrigator, call 892-6187 or e-mail him at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
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