|
Tracleer and PPH News
Dennis Township girl makes progress in battle with rare ailment
By DEBRA RECH For The Press, (609) 463-6719
August 24, 2007 - DENNIS TOWNSHIP - Julia Vandenburg, of Dennis Township, is a very happy 12-year-old. She isn't that thrilled that school is starting soon but is happy that she will be able to stop carrying two backpacks to school each day.
Besides her bookbag, Julia had to wear a small backpack that contained the medicine she needed at all times to battle primary pulmonary hypertension, or PPH, an extremely rare and life-threatening disease. An IV line in Julia's chest was used to pump the medication she needed 24 hours per day.
PPH is characterized by high blood pressure in the pulmonary artery due to unexplained changes in the small blood vessels in the lungs, which impedes blood flow through the vessels. This can cause enlargement and subsequent failure of the heart.
Julia's family will host their fourth Shore Cure for Pulmonary Hypertension Golf Tournament and Silent Auction in her honor on Monday, Sept. 10 to benefit the Pulmonary Hypertension Association, or PHA.
Julia's battle with the disease began at age 2 when she started having seizures. She was finally diagnosed with PPH at St. Peter's Hospital in New Brunswick. Symptoms of PPH are shortness of breath after slight exertion, fatigue, chest pain, dizzy spells and fainting. Julia was lucky, because by the time she was properly diagnosed, her heart had begun to enlarge, which would have been fatal had it not been detected in time.
PPH was considered a terminal disease until a few years ago. In 2005, Julia started taking a drug called Revatio, which she took orally but still had to use the IV pump for blood thinner, which she kept with ice packs in her small backpack.
Julia lives with her father, Kevin Vandenburg, and grandparents, Jim and Diane Zalewski.
"Julia has been hospitalized a lot for her disease and had a main line into her heart since she was just over age 2," Diane Zalewski said. "She missed a lot of school through the years due to her disease and line infections. The doctors feel as frustrated as we were with the frequency of her line infections and decided it was time to try a new oral medication called Tracleer.
"When Julia went back for her six- week checkup, everyone was all smiles as she is doing better in all respects than when she was on the pump," Zalewski said. "She continues to improve and has had her best summer ever."
When Julia had to wear a pump, water sports were limited, which really made her sad.
"Now that she doesn't have to wear a pump she's become somewhat of a fish," Zalewski said with a smile. "She swims in the neighbor's pool or in the ocean constantly. She's growing in leaps and bounds and does all the normal preteen activities, talking and hanging out with friends, buying clothes and reading the newest Harry Potter book. Julia loves the Harry Potter books."
In the past three years, the Shore Cure event has raised more than $80,000 for the PHA. This year's goal is to raise $45,000 and double the number of players.
"We want to raise awareness of PPH as well as money for research," Diane Zalewski said. "Although there is still no cure, much more is understood about this disease, and Julia is fortunate to respond well to most of the medications. We decided to do the golf fundraiser four years ago since PPH is still considered a rare disease. Every cent we make goes to PHA. The progress that Julia has made is a direct result of the people in our area who have been kind enough to donate in our effort to find a cure for this terrible disease."
Julia, now a seventh-grader at Dennis Township Middle School, said that now that she is off the pump, she feels "like any other kid."
"Living with this disease has made me more aware of other people who suffer with illnesses and what they have to go through on a daily basis," Julia said. "Since I was with the pump for so long, it just felt a part of me. Some people wear glasses, some have braces on their teeth. I wore a pump, but I'm glad it's gone."
|
