Residents Rally For Family Hit Hard By Medical Bills
By:Michelle Gabrielle Centamore
04/02/2008


Having one family member suffering from a debilitating medical condition is hard enough, but the Weissbach family, of Ridge, was hit with another medical prognosis that has the community rallying around them, with a fundraising event scheduled for April 5.


Tom Weissbach was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, two years ago, and his 20-year-old daughter Danielle Weissbach was born with a congenital heart defect called tricuspid atresia - which occurs when a valve that connects the right ventricle to the right atrium is missing. She also suffers from a form of cardiac arrhythmia called tachycardia.
The Friends of Tom and Michele Foundation, named after Tom and his wife, Michele, was a collaborative effort of the Weissbach's family and friends to help ease financial difficulties while coping with the physical and emotional effects of both Tom's and Danielle's health conditions.
According to foundation Chairman Richard Amper, the Weissbach family already was facing financial and emotional hardships because of Danielle's heart condition, which requires ongoing medical attention and a cautionary lifestyle.
"And when Tom was diagnosed with ALS," he said, "that was the straw that broke the camel's back. He worked as long as he could and when he was no longer able to, it really became important for the family and neighbors to lend a helping hand. So we decided that we would write to our neighbors and hold special events and we would generally do a fundraising campaign that would help raise money to ease their medical and household needs, such as food, electricity, taxes and mortgage."
The next event will be a spaghetti dinner and Chinese auction at the Ridge Fire Department on Francis Mooney Road in Ridge on April 5.
Noting Michele's determination to support her family in every way she can, Amper said that because of Danielle's ongoing needs and her husband's debilitating illness - not to mention her responsibility to meet the needs of her other three younger daughters - it has been difficult for her to adequately care for her home and family. Amper said the Weissbach family is a young, close-knit, hardworking family doing their best to cope.
Tom was diagnosed on December 21, 2005 with ALS. Prior to the diagnosis, he said he experienced muscle twitching in his left arm, which grew worse after a shoulder injury. "After that," he said, "I went to a few different doctors and in September of 2005 one of the doctors thought it could be a motor neuron disease. That doctor sent me to Columbia Medical Center in New York City where I was diagnosed with ALS. "
According to Tom, his condition is worsening and hampering his ability to carry on typical day-to-day activities. "I have considerable weakness throughout my left side. I have very little balance and am unsteady on my feet. I can no longer walk any significant distance, run, climb stairs, or lift certain objects," he said. "I use leg braces and occasionally use my power wheel chair, but mostly I walk with a walker."
As if the physical effects of ALS were not enough, he said the emotional toll it has taken on him and his family is overwhelming. "It's difficult because I was supposed to take care of my family and now my family is taking care of me," said Tom. "I feel like I let everyone down. I try to stay positive to show my children that when life gets tough you have to fight harder and try to stay focused."
From a financial perspective, his condition has left his family dependent on friends and relatives, who, Tom noted, have been very supportive. "You don't sit and plan for this kind of thing," he said. "Every three months, we go to [the Milton S.] Hershey Medical Center [in Pennsylvania] to visit my ALS doctor. I also go to physical therapy twice a week and see a homeopathic therapist for vitamins and supplements."
Treatment for his condition, he said, is very expensive - one medication not covered by insurance can be as much as $1,000 a month. His current prescription plan is expected to expire in three months, which will require him to pay for a COBRA policy at about $900 per month.
While Tom has been dealing with his diagnosis for the past two years, Danielle has been dealing with her heart condition since she was born in 1988. She experienced her first open heart surgery when she was only six weeks old and a second heart surgery when she was two and a half years old. Last week, she was admitted to the hospital for a cardiac catheterization.
Although she said her condition has not progressed, Danielle, who is currently a sophomore at Stony Brook University, said her health has been under close medical attention from birth and she has always had to maintain a cautionary lifestyle.
"I need to pace myself more and go for more in-depth testing because I am older now," she said. "Eventually, I will need another heart surgery, but I don't know when. My condition has affected me physically because I am very limited in the amount of physical activity I can perform. I can't run at all. I can't walk long distances without resting or climb more than one flight of stairs. I can't participate in sports or stand on my feet for long periods of time. I can't tolerate the heat or the cold."
Danielle said that throughout her life her family has been a mainstay of support. "My sisters are very good to me because they understand that I need extra help sometimes and extra care. Sometimes I get frustrated because I can't do what other people my age can do," she added. "I can't work as much and I can't go out as much. I get sick easier, too."
Since her father's diagnosis, Danielle said the family has been struggling. "It's difficult to see my dad become weaker and see the stress that my parents have to go through. My sisters and I wish we could do more for them," she stated.
The Friends of Tom and Michele spaghetti dinner and Chinese auction will begin at 5:30 p.m., with the first drawing to start at 7 p.m. Admission is $15 for adults and $7.50 for children under the age of 12. Prices for raffle tickets will range from $1 to $5. Donations can be mailed to Friends of Tom and Michele, PO Box 737, Wading River, NY 11792. For more information, call Christina Collins, secretary of the foundation, at 886-1217.



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