$100K raised to help girl with disease
“I just can’t keep on top of it all,” Joan Johnston, 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, Johnston 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 Lindsay 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 Lindsay. In total, Lindsay’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, Lindsay’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 Lindsay.
“These people, we could have never have done this on our own,” Spengler said.
Spengler said word of Lindsay 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 Lindsay 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 Lindsay 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 Lindsay’s Web site, www.newhopeforlindsay.com
Johnston said the family is hoping arrangements for treatment and transportation can be made to send Lindsay within the month, and Johnston thanked the generous people who have contributed to making Lindsay’s dream of a fresh start at a normal adult life a reality.
“The graciousness in this community is just overwhelming to me,” Johnston 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,” Johnston said. “If nothing else, all the prayers will get her over there and back.”
Johnston called Lindsay’s story “a tremendous community story” because it is the community that has banded together to make a difference in Lindsay’s life.
“It’s is just so encouraging that a community can stand behind this, and that’s what they’ve done,” Johnston 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 Lindsay 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 Lindsay Spengler to Germany for the life-changing treatment. To make an online donation, or for more information about Lindsay 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.