$100k raised to help girl with painful disease (article)

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$100K raised to help girl with disease

e Kessler, bkessler@...

03/21/2007

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NEW HANOVER -- In less than one month, the Boyertown community has rallied

support and raised more than $100,000 to help Spengler get her life

back.

After learning that the 22-year-old Boyertown graduate, who suffers from two

debilitating diseases that have left her bedridden for the past four years,

desperately needed funding to receive an experimental treatment overseas,

the community responded with an outpouring of love and generosity.

" I just can't keep on top of it all, " Joan ston, family friend of the

Spenglers, said of the letters, e-mails and donations she's been collecting

for the family.

" We're up to $101,000 " in donations, ston said enthusiastically. " Which

is enough to get her over there and get her into the whole treatment. "

Spengler, who was once an avid athlete and well-rounded student, suffers

from reflex sympathetic dystrophy (RSD) and porphyria, which have left her

confined to a bed. The two diseases make her skin feel like it's on fire and

make her life next to unbearable.

While all the treatments has tried so far to help rid her body of

the horrible diseases have not worked or have helped to ease her symptoms

only slightly, one option still gives hope to the Spengler family. The

treatment is experimental, at cost to the family, and is only available in

Germany, which means her family must raise funds for travel expenses,

including an air ambulance to transport . In total, 's family

anticipates the cost of her treatment to be about $170,000.

With the continued support from the community, the Spenglers are nearing

their goal.

" It's been an amazing lesson for me, " Sharon Spengler, 's mother said

of the community's generosity. " It just seems like when you need to do

something so huge, if everyone does just a little piece, you can do so

much. "

" I know they've given sacrificially, and yet all those little things count, "

Spengler said.

Spengler said the local community, including the Boyertown Area School

District, local media and members of the community, have been essential to

raising the critical funds to help .

" These people, we could have never have done this on our own, " Spengler

said.

Spengler said word of and her bravery, living each day in pain but

still able to hold on to the hope that she will be able to regain her life,

has reached people all over the nation. She has received letters and

donations from Florida, West Virginia, Virginia, Wisconsin among other

states.

" It really goes beyond words, just heartfelt feelings, " Sharon Spengler

said. " You can't put them into words. "

" It just means the world to us because just so desperately needs to

get to Germany, " Spengler said. " The pain is just wearing on her. "

If more than enough money is raised to send to Germany and help pay

for her treatment, any surplus donations will be put into a Sharing Hope

trust to benefit other RSD patients who may need the help, according to

's Web site, www.newhopeforlindsay.com

ston said the family is hoping arrangements for treatment and

transportation can be made to send within the month, and ston

thanked the generous people who have contributed to making 's dream

of a fresh start at a normal adult life a reality.

" The graciousness in this community is just overwhelming to me, " ston

said. She added that she has been particularly touched by the prayers and

notes she has received from strangers, that accompany donations.

" (Some people) don't know her but their heart is there for her, " ston

said. " If nothing else, all the prayers will get her over there and back. "

ston called 's story " a tremendous community story " because it is

the community that has banded together to make a difference in 's

life.

" It's is just so encouraging that a community can stand behind this, and

that's what they've done, " ston said.

" How do you ever repay the people who have done so much? " Spengler said.

" There's just so many people -- the high schools and the elementary schools

-- and they're so excited to do it. It's just so cool to see the goodness in

people. They've given us all hope that life may be different. All these

people are giving hope. "

*Although much progress has been made through the generous spirit of the

community, about $70,000 in funds are still needed to help send

Spengler to Germany for the life-changing treatment. To make an online

donation, or for more information about Spengler, RSD and porphyria,

visit www.newhopeforlindsay.com *

Donations may also be made by sending a check made out to " RSD " to the

National Penn Bank, 2900 N. Charlotte St., Gilbertsville, PA 19525.

*©The Mercury 2007*

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