Fundraiser aims to help Boyertown grad with debilitating diseases

Fundraiser aims to help Boyertown grad with debilitating diseases

NEW HANOVER — For Lindsay Spengler, every single moment of her daily life is like living in an inferno.

The 22-year-old — a once vibrant athlete who loved nothing more than the game of softball, and who is remembered by family, classmates and teachers at Boyertown Area Senior High School as a well-rounded student-athlete — has been bedridden for more than four years, suffering from two debilitating diseases, reflex sympathetic dystrophy (RSD) and porphyria. The two diseases make her skin feel like it’s literally on fire, and make her life next to unbearable.

“Before her diagnoses, she was quite the athlete and a very good student,” Lindsay’s mother Sharon Spengler said.

Spengler said the discovery that her daughter had RSD came after she broke her thumb during a batting practice.

She said RSD can remain dormant in people, and it is usually discovered after a person suffers some type of injury that causes pain.

Spengler explained that a person’s body experiences pain from an injury to alert the person that something is not right. But with RSD, the signal of pain from the nerves to the brain doesn’t stop even when the injury is no longer there.

“The nervous system gets off track,” Spengler said.

One of the measures taken to help a person deal with their RSD, and which can often times eradicate its symptoms, is physical therapy.

Physical therapy helped Lindsay deal with the broken thumb and the RSD symptoms it triggered, as well as RSD symptoms triggered by a sprained ankle a few years later. However, a second, more severe sprain triggered RSD symptoms that never went away and even worsened.

Adding to the discomfort the RSD symptoms cause, Lindsay was also diagnosed with porphyria, which is a group of disorders characterized by a deficiency in heme, the iron-containing part of the hemoglobin in red blood cells that carries oxygen to all organs in her body.

Spengler said it’s like the “body is making toxins that poison the system.”

The porphyria makes things more difficult for Lindsay because some medications for RSD adversely effect porphyria symptoms, and the number of medications she can take is limited.

“She can’t walk, she cannot eat, she hasn’t eaten in four years,” Spengler said. “The nausea is terrible, the fatigue is terrible.”

“Some of the worst of her symptoms started the end of her junior year,” Spengler said. “Her senior year she was tutored mostly at home. She was able to get to class mostly through a wheelchair. She did graduate in 2002 and her plans were to go to college and her plans were to play softball at the collegiate level.”

But things didn’t go as Lindsay planned.

“Right now the pain is pretty much all-consuming,” Spengler said. “For the past number of years she’s pretty much been confined to bed. Since 2002 she hasn’t walked. She has two stomach tubes (to be fed).”

Her mother explained that any sensation on Lindsay’s skin can spark searing pain.

“The pain is so bad, she just explains it as if someone threw gasoline on your body and lit a match,” Spengler said. “It just burns.”

“This morning she said it was like she was being baked in an oven,” Spengler said.

As if the physical pain is not enough for Lindsay to suffer, she is also faced with the guilt that her condition impacts the way her entire family functions.

“It changes family dynamics,” Spengler said. “As anyone knows, when you have someone really sick in your family, if someone has cancer, it changes dynamics. The person who’s suffering suffers because they know that you’re not doing something because they need you.”

Lindsay has undergone several surgeries, and endured an obscene amount of prodding and testing and treatments, and thus far, nothing has worked.

“It’s very difficult to see someone you love hurting that much and you can’t do anything to help them,” Spengler said.

But there is still hope.

Lindsay’s family is hoping she will have the opportunity to undergo an experimental treatment, although it’s only available in Germany and will be at cost to Lindsay’s family, that could possibly reverse her symptoms, and enable her to regain a normal life.

But first, her family must raise the funds, between $160,000 and $180,000, for her to travel to Germany and undergo a Ketamine-induced coma, which her mother hopes will “reset” her body so the pain and RSD symptoms are gone.

“Presently, doctors from Hahnemann Hospital feel Lindsay is a good candidate for the Ketamine-induced coma,” Spengler said. “They feel she is a good candidate for this treatment because all of the treatments she’s had so far haven’t worked.

“Even through this, as much pain as she is in, she still worries about the rest of us,” Spengler said. “I know that there are times that I know it hurts so bad, but she doesn’t cry until I leave the room, because she doesn’t want me to know how bad it hurts her.”

“She just wants to go over there so she can get some relief from this pain and hopefully get back to school and get her life back,” Spengler said.

Spengler’s family is not alone in their concern for Lindsay.

Boyertown Area High School, Lindsay’s alma mater, is holding its fifth annual B-Town Showdown, which pits students against faculty in basketball and volleyball matches, at 6 p.m. Thursday in the high school gymnasium.

The community is welcome to come out for the event being organized by the Student Council. The best part is all the proceeds from the event will go toward the fund for Lindsay’s treatment.

“Lindsay was a former Student Council member and she was pretty active when she was here,” said, Jeff Kusniez, Student Council advisor. “This is for us one of those perfect examples of how we can give back to someone who is important to us, and someone who is important to the community and someone who is one of our own.”

Kusniez said the idea to donate the proceeds to Lindsay’s treatment fund came from Dan Fries, a teacher in the high school, who taught Lindsay.

Kusniez said the cost for admission to the event is $2 for students and $3 for adults, but if someone wants to give a larger donation, the school will gladly collect it and make certain it goes to Lindsay’s fund.

The fundraiser is crucial to Lindsay’s ability to receive the treatment in Germany because the family must absorb the total cost, and they’re hoping Lindsay will be able to receive the treatment by the end of March.

“The support to get Lindsay to Germany would be amazing,” Spengler said.

Joan Johnston, a family friend, said that the community support is appreciated and so important to helping Lindsay.

“Without this treatment, Lindsay has no life,” she said. “This really is the opportunity to give a 22-year-old back some sort of life.”

More information on Lindsay Spengler, RSD and porphyria, and for more information on how to help Lindsay get to Germany, visit

Donations that will directly fund Lindsay’s treatment in Germany, which will cost an estimated $170,000, can be made by sending a check made out to “RSD” to the National Penn Bank, 2900 N. Charlotte St.,Gilbertsville PA 19525. Donations may also be made online on Lindsay’s Web site.

©The Mercury 2007

Click Here For The Original Article Online.



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