After watching a fatal disease cripple her family, an area teenager is hoping to raise awareness so families won't have to feel the negative effects of the disease in the future.
Emily Durcholz, 17, Brazil, has organized a fundraising walk to raise awareness for Mucopolysaccharidosis (MPS), a genetic disorder medicinenet.com refers to as "one of a series of inherited metabolic disorders affecting a type of complex carbohydrate called mucopolysaccharide that is deposited in body tissues because the person lacks the specific enzyme needed to metabolize it."
Those inflicted with the disease are unable to produce any of the necessary enzymes needed to function and eventually stunts many major abilities, including mental development.
Emily is the daughter of Chris and Annette Durcholz.
The disease has been a constant source of pain for the family, who lost their 11-year-old son, Zach, to MPS III, or Sanfilippo, in 1998. Sanfilippo is a neurological disorder which can lead to, among other things, hyperactivity, dementia and seizures.
The nightmarish situation arose again for the family with the birth of their fifth child Ben was also born with MPS II. Ben, 8, is not expected to experience a longer life than his late brother, as people with MPS generally don't live beyond their early teen years.
Hoping to raise awareness for the disease, Emily, a junior at Northview High School, is organizing an MPS walk, "Beat It For Benny," which she plans to conduct at Deming Park, Terre Haute, Sept. 25.
It is one of several MPS walks being conducted all over the country throughout the year.
Durcholz said she saw the walk as crucial not simply for her family, but for anyone who may experience the hardships she and her family have experienced with the ailment.
"This walk is for everybody," she said. "For people like my brother, the damage is done. The goal is to raise awareness to as many people as possible."
With the official walk date still more than five months away, Durcholz said most of the specifics in terms of planning are still in the preparatory stages. Currently, she said she is focusing on collecting donations.
Thus far, she has received portions of money independently from friends and family, but is hoping to bring them in from all over the areas as "Beat It For Benny" draws closer.
All told, she said her collection goal is $5,000.
All of Emily's efforts have earned her great admiration from her family members who have endured the same MPS hardships she has.
Her mother, Annette, said she is "very proud" of her daughter and was very happy to see her take such as interest in raising awareness for the disease.
"(Emily) has spent countless hours of her own free time to try to help make a difference in the lives of MPS kids and their families," Annette said. "She has seen first-hand the devastation the MPS causes to kids and their families and the fact that she wants to help change that is remarkable."
Durcholz urged anyone interested to donate to the cause. She stressed that if properly funded, medical centers could not only begin to cure MPS, but similar neurological diseases such as Pompe disease.
More than anything, Durcholz said her goal was to raise awareness so as to offer assistance to future victims, whose quality of life is greatly damaged by their unfortunate circumstances.
"Finding a cure for MPS is very crucial in my mind," Durcholz said.
"It halts children. My brother can't enjoy his childhood. If people can ban together for a cure, I really think they should."
For information about donations, call Durcholz at 812-691-1456 or e-mail her at email@example.com.