Meeting Adversity

By Dan Miner
The Tonawanda News

— Jen Sanfilippo, 23, doesn’t have a normal life.
Sure, she can work and live without fear of physical pain. But Sanfilippo’s 46-year old mother, Mary Burns Sanfilippo, has amyotrophic lateral sclerosis, or ALS, more commonly called Lou Gehrig’s disease. And that’s enough worry for anybody.
“It’s not easy at all,” Jen said. “It’s probably the hardest thing I’ve ever had to face.”
ALS is a disease in which nerve cells controlling voluntary muscles degenerate and die, causing extreme weakness and eventually death, according to Dr. Tomas Holmlund, a neurologist at the Dent Neurologic Institute in Amherst and director of the Muscular Dystrophy Association clinic.
“They get really weak, they can’t move their arms or legs, and eventually they stop breathing and die,” Holmlund said. “But everything else is normal. Their brain and heart work just fine.
“You wouldn’t wish this disease on your worst enemy.”
About 90 percent of those diagnosed with the disease die within five years, Holmlund said. Roughly 400 new cases are diagnosed in New York state each year.
Mary was diagnosed July 14, 2006, after she and family members became worried about problems with her speech. After extensive testing, the diagnosis was clear.
Since then, her speech has admittedly gone downhill and her hands are weaker. It takes her more than an hour to write checks, a process that only used to take 15 minutes. She has special instruments to open cans in her Town of Tonawanda apartment and is busying herself getting used to a computer which does her talking for her.
But with the help of Jen, she hasn’t taken the fight laying down. Each admit that they’re scared, and are trying to be brave for each other, but smiles are present on their faces. When they hug, they grip each other tightly.
“We spend time together and it’s not sad,” said Jen. “Each moment is wonderful and another moment to remember.”
The two have lunch three times a week, speak daily on the phone and play cribbage against each other on the Internet. Friends and family members teamed up to pay for the two to take their only vacation together, a September trip to Fort Lauderdale.
“It was awesome,” Jen said. “It was one of the best memories ever.”
And Jen has poured herself into the cause, saving her tears for a monthly support group meeting and spending the rest of the time researching her mother’s disease, or doing her part to help it.
The two participated in the Walk to D’Feet ALS at Delaware Park in August 2006, placing first among 20 walkers with $3,542 in donations to the ALS Association, Western New York.
More recently, Jen is in the process of setting up a fundraiser for her mother on Feb. 24 at Rapids Fire Hall in Lockport.
To offset the high costs of health care for her mother, she hopes to raise $25,000. Only three weeks after sending out 1,300 requests for donations to local businesses, she’s already raised $4,600. Tickets to the dinner are $25, and there will be silent and Chinese auctions.
For more information, visit the Web site, http://maryburnssanfilippo.tripod.com.
“The goal is to fund raise for her health care,” Jen said. “A lot of stuff isn’t covered through insurance.”
Since nobody knows what exactly causes ALS, treatment is focused on easing the pain of the symptoms rather than a cure. One drug, Rilutek, is known to slow its degenerative effects.
Mary’s treatment includes Rilutek and occupational and speech therapy. She uses machines to help her breathe at night and clear her lungs during the day. Still, she looks completely normal.
“It’s frustrating this has happened,” she said. “I just do the best that I can.”
Contact Dan Miner at 693-1000, Ext. 115.

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