Pennies for Jenny
By Mark Raeber
Progress Staff Writer
The students and staff in Shiloh District 85 hoarded their pennies over a three week period in April to raise more than $2,200 for a very good cause — to help find a cure for a rare disease severely affecting one of their school mates.
Jenny Schnitzler, the daughter of Mark and Joni Schnitzler of Shiloh, was a happy, healthy little girl until 2000 when she reached the age of two. Then she suddenly stopped walking.
Doctors said she had significant damage to the region of the brain that regulates her fine motor controls and the damage was caused by a mitrochondrial disease.
Conditions of this type result from failures of the mitochondria. These specialized compartments, which are present in every cell of the body except red blood cells, are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth.
When they fail, less and less energy is generated within a cell. Cell injury and even cell death follow. If the process is repeated throughout the body, whole systems begin to fail and the life of the person is severely compromised. Jenny, now 10, suffers from Lee’s disease, one of the more severe types of mitrochondrial disorders.
Unable to walk or sit up because of muscle weakness and loss of motor control, she relies on a wheelchair for her mobility. But that does not stop her from being an integral part of her fourth grade class at Shiloh Elementary School.
In April, her school mates stepped up big to help fight her medical disorder by raising $2,222.98 for the United Mitrochondrial Disease Foundation. A team of students, teachers and parents presented the money during the foundation’s fifth annual run/walk, One Step Closer to a Cure, and its Mito-What? fun day on April 19 at the Shrine of Our Lady of the Snows.
Unfortunately, cold, rainy weather spoiled some of the fun during the fun day.
The Shiloh schools’ penny drive has been an annual event since Jenny arrived there as a kindergartner. In that first year her classmates raised nearly $1,000.
“The penny drive seems to be our best fund raiser,” said physical education teacher Jami Richter, who headed this year’s effort with third grade teacher Charlee Dixon. “The kids really got involved and they raised a lot of money for a little school like this.
“Our early childhood through fifth graders all collected pennies in their classrooms,” she explained. “We also did hat days at the middle school and elementary school during which the children donated money for the privilege of wearing hats in school. And we had a jeans day for teachers.”
Jenny’s mom Joni called her condition “a fluke disease.”
“The mitochondria are the power plants of your cells and they process food into energy. Her’s don’t work right so her body does not get the energy it needs. “There is no treatment other than to give her more vitamins to help her body work better,” she added.
Because of the severity of her condition, Jenny expends most of her energy breathing, so at night she needs a ventilator.
Medications to treat the disease have not been found, so she takes a vitamin cocktail every day to help her body get the nutrients it needs to continue working.
Jenny also has a special diet. The loss of muscle control means she cannot use her tongue or chew and she relies on a feeding tube to get the necessary nourishment. A trachea tube supplies the air she breathes.
Jenny uses an electronic communicator and the help of a teacher’s aide to talk with her classmates, teachers and friends. The device, which resembles a computer notepad, gives her a voice by saying the words she wants to convey.
“This is very rare and we don’t know what her prognosis is,” Joni Schnitzler said. “She can’t do much physically but mentally she is doing fine. Our hope is with the vitamin cocktail she will respond and not lose more strength.”
