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| By Paula Canning Staff Writer SOUTH HADLEY Because her best friend's daughter had been diagnosed with type 1 juvenile diabetes at six months old, Deborah Pisciotta was no stranger to the red flags excessive thirst, frequent urination, drowsiness and weight loss. So, when her then-13-month-old son, Anthony, started showing these classic signs, Deborah said "she just knew." Acting on her instincts, Deborah phoned the doctor, who was initially unconvinced of her suspicions. "It took me calling them three times until they finally suggested that I bring him in," Deborah said. After a giving Anthony a short examination and checking his blood sugar, the doctor confirmed Pisciotta's worry Anthony had type 1 diabetes, a condition that occurs when the pancreas produces an insufficient amount of insulin to regulate blood sugar levels. "I broke down crying," she said. "I was hoping it wasn't true, even though I already knew." After being diagnosed with the disease, Anthony spent a weekend in the hospital, during which Deborah said that she and her husband, Jim, received a crash course in caring for a juvenile diabetic. While the couple was taught "everything they needed to know" about the disease, she said that at first, she didn't feel prepared to take Anthony home. "Those first few weeks we were calling the doctor every five minutes with questions," she said. Two and half years later, Deborah said it's "just been a whirlwind" for her and her husband. From pricking Anthony's finger an estimated 15 times a day to check his blood sugar, to regulating his insulin pump, to carefully monitoring and measuring his food, to checking on Anthony an average of every 2-3 hours during the night, Deborah said she and Jim "walk a tightrope" 24 hours a day, seven days a week. She said that there isn't ever a time that she's not on her guard meticulously logging in what the three-year-old eats into a chart, and checking to make sure he's feeling well. "It is something that never goes away. You never have a break if you slack off, he'll feel it," she said, explaining that if his blood sugar gets too high, he'll get nauseous, while if it gets too low, he'll experience dizziness. "If it was just you, it might be different," she continued. "But when it's your kid you're talking about, you want to do everything you can possibly do. You can't make it go away, but you can try and make the best of it." And, for Deborah and her husband, doing everything they can doesn't end with keeping Anthony healthy and safe it also includes urging lawmakers to advocate for more research to find a cure for type 1 diabetes. Tomorrow, Deborah, Jim, Anthony, and her 14-month old daughter will travel to Washington D.C., where Anthony will represent Massachusetts in the annual 2005 Juvenile Diabetes Research Foundation (JDRF) to the Children's Congress, a grassroots event that aims to remind lawmakers of the critical need to fine a cure for type 1 diabetes. According to Deborah, Anthony is one of 150 children with type 1 diabetes who have been selected to represent their state on Capitol Hill. She explained that the children, along with their families, will meet with lawmakers in small groups, and share their stories, struggles, and hopes for an increase in funding for research. "The whole point is going there and putting a face to all of this," she said, a purpose reflected in the event's slogan, "Promise to Remember." The Children's Congress will also include Congressional visits by the child delegates and a hearing in the Senate Committee on Government Affairs where Mary Tyler Moore, chairman of the JDRF, will testify along with researchers and business and community leaders on the need for continued funding for type 1 diabetes research and related complications. Deborah said that when she learned of the minimal amount of funding provided for type 1 diabetes research in comparison to other serious diseases such as cancer, she said she was "shocked." "The amount of diabetes research is pennies compared to what is being done for cancer, even though an equal number of people are affected," she said. She also said that although many a great deal of scientific research has resulted in breakthrough treatments and information about the disease over the past 15 or 20 years, lawmakers are "not really not doing as much as they can be doing," in terms of funding. For the Pisciottas, their trip to Washington D.C. isn't their first time appealing to lawmakers to vote in favor of more funding for research. Face to face with Congressman Richard Neal (D Massachusetts) in his office in 2003, the couple shared their story. "He seemed truly touched by what we had to say," she said, adding that she is hoping for a similar reaction on Capitol Hill. She said that with the proper funding, she believes that a cure some time in the next 20 years may be possible. And if not a cure, Deborah is hoping that more research will yield a less invasive way of managing a juvenile type 1 diabetic's health. "I am just hoping for something that will allow me to not have to prick my son's finger 10 to 15 times a day," she said. "It would mean so much, especially for the kids." Deborah said that over the past few years, the most difficult obstacle has been "knowing that he has to deal with something like this. It's such a huge disease and the complications are so severe." She said although her and Jim are experienced in treating Anthony's condition, monitoring his blood sugar through food intake isn't fool proof especially because typical bodily functions such as an adrenaline rush or a growth spurt can cause an immediate hike in blood sugar. Despite the hurdles, Deborah said that she and Jim had adjusted as well as possible and have learned what works best for their child. After trying insulin shots to help Anthony maintain steady blood sugar levels, for example, Deborah switched Anthony to using an insulin pump a portable, battery-operated device that delivers a specific amount of insulin through the abdominal wall and can be programmed to deliver different doses at different times of the day, according to food intake or the body's insulin level fluctuations. "It does a better job of mimicking the normal functioning of a pancreas than the shots" she said. She added that studies have proven that the insulin pumps provide toddlers with better blood sugar control than insulin shots. She said that dealing with the disease has also been made a little easier by the support she has found in other local parents who have children with diabetes. She explained that she and a few other parents have formed a support group that meets on the third Sunday of every month. "It's nice to know that someone is going through the same thing," she said. "It keeps you going, it keeps you grounded." Not only does it give the group a chance to connect with similar experience and concerns, it allows their children to interact with other children who have to deal with the disease, according to Deborah. "It's nice for them to see another child who has the insulin pump so that they don't think they are different from other kids," she said. In looking towards the future, she said that hopes that Anthony's condition won't prevent him from pursuing interests such as sports, or from being able to concentrate in the classroom. But for right now, "I just want him to focus on being a three year old and having fun." *** For anyone interested in helping out Anthony and his family, a Juvenile Diabetes Golf Tournament Scramble to benefit Anthony is scheduled to take place August 28 at the Pine Gove Golf Club, located at 254 Wilson Road in Northampton. The cost is $65 a player, which includes green fees, a cart, snacks after nine holes, and a steak dinner. For more info. or if you are interested in becoming a sponsor for the event, call Kathy Dieman at (413) 527-1203. |