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Fw: [ceda] Escondido community rallies around little girl's struggle   Message List  
Reply | Forward Message #326 of 643 |
> http://www.nctimes.com/articles/2005/04/12/news/community/41105200757.txt
>
> She has a rare disorder that makes her skin delicate, easily torn and slow
> to heal, and she will be using a wheelchair for the near future, but
> 11-year-old Ashley McFarland tries to stay tough.
>
> "(I) just don't think about it," said the little girl, a fourth-grader at
> Orange Glen School in Escondido. "That's what makes me brave."
>
> Ashley has Ehlers-Danlos Syndrome, which is a defect in connective tissue
> that supports body parts such as skin, muscles and ligaments. Ashley's
> skin
> is fragile; her legs, in particular, appear slightly bruised, and her
> joints
> are unstable.
>
> What most frightened her was imagining how her classmates at Orange Glen
> School would react to her condition.
>
> Because Ashley has been out of school for two months and is without health
> insurance, and her mother is struggling to pay mounting medical expenses,
> her classmates learned about her situation.
>
> She needn't have worried. They reacted by wanting to help.
>
> Ashley's plight also struck a similar chord with administrators, teachers
> and parents at the East Valley Parkway campus. The school's Parent-Teacher
> Association has organized a fund-raiser that will take place Wednesday at
> Rubio's Fresh Mexican Grill.
>
> Natasha McCarthy, the parent group president, said Ashley's unusual
> disease
> and her family's insurance plight prompted the group to step forward.
>
> "Despite everything, she is able to put a smile on her face," McCarthy
> said
> of Ashley, who moved with her family in September to Escondido from San
> Marcos.
>
> Still, said Malia Flores, Ashley's mother, her daughter's spirits are
> down.
> "She was so happy and cheerful," Flores said. "Now she's not. She's more
> quiet and timid."
>
> Ashley has to stay out of school until she is out of the wheelchair, and
> her
> mother and doctors don't know when that will be.
>
> Her legs feel weak, Ashley said.
>
> "It feels like I don't have a leg when I stand on it," she explained.
>
> Collagen ---- which acts as a glue that gives strength to skin ---- is
> flawed in people with Ehlers-Danlos.
>
> There is no known cure, and doctors are unsure about whether Ehlers-Danlos
> will affect the length of Ashley's life, said said Malia Flores, Ashley's
> mother. One out of 10,000 people is diagnosed with the disorder, and it's
> particularly rare in children, Flores said.
>
> The little girl's newest struggle began in February. What looked like a
> bruise began to swell, turned out to be a streptococcal infection and
> required emergency surgery. During her recovery, she began using the
> wheelchair.
>
> Over the last few weeks, at least one more spot has begun to swell in
> Ashley's legs, indicating the bacteria might be back, her mother said.
> Ashley is currently uninsured, because Flores recently married and Ashley
> lost her Medi-Cal insurance, a state program for low-income patients,
> because the family's household income changed.
>
> Flores is trying to get the matter resolved, and in the meantime is paying
> off small increments of the thousands of dollars in various hospital
> bills,
> she said.
>
> Still, small triumphs are taking place. Ashley took a step during physical
> therapy last week, her mom said. Since then, she has been hopping on her
> right foot to get around her home.
>
> "To see her get out of the wheelchair and take a step ---- it was a
> miracle," said Flores.
>
> Ashley's newest passion is her service dog, an 8-year-old golden retriever
> named Rusty. Rusty pulls Ashley's wheelchair when she's tired.
>
> On Wednesday at Rubio's from 4 to 8 p.m., customers with a flier about
> Ashley will have 20 percent of their bill donated to the little girl's
> medical expenses. The fliers are available at the front office of Orange
> Glen School, 2861 E. Valley Parkway, and at the restaurant.
>
> "Every school needs to have a sense of community," McCarthy said. "They
> are
> a part of our community and we want to help them."
>
> An account has also been set up in Ashley's name at the Bank of America
> branch at 1350 E. Valley Parkway, her mother said.
>
> Contact staff writer Tanya Rodrigues at (760) 740-5420 or
> trodrigues@....




Tue Apr 12, 2005 10:37 pm

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Barbara Davis
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Apr 12, 2005
10:36 pm
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