Teen Has Rare Disease, Dad Plans to Donate Hair

DENNISVILLE – When Julia Vandenburg was 11 years old, her family wondered if she would ever have a future. She had primary pulmonary hypertension, or PPH, an extremely rare and life-threatening disease. She had to wear a small backpack 24 hours a day that pumped medication into her body that she needed to stay alive. Now 19, Vandenburg is anxiously waiting to go back to Widener College School of Nursing after surviving a double-lung transplant and other setbacks due to her illness.
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.
Vandenburg’s father, Kevin Vandenburg, wants to “pay it forward” and give to the organization Locks of Love, which provides wigs to cancer patients who lose their hair due to treatment. People grow their hair to at least 10 inches then put it in a ponytail that is cut off and donated to the organization. Kevin has been letting his strawberry blond hair grow for three years and will have it cut off at 10 a.m. June 28 by Creations Hair Salon at Abby Estates right before Vandenburg’s aunt’s wedding there. Vandenburg is maid of honor and Kevin will be a groomsman. They decided to cut Kevin’s hair while the stylists also fix the hair of the bridesmaids.
“We were just talking about when he was going to cut his hair and the subject of donating it came up and he decided he was going to donate it,” Vandenburg said. “You hear a lot about women donating their hair to girls or other women,but not many men do it for little boys.”
Vandenburg’s battle with PPH began at age two, when she started having seizures. She was finally diagnosed with PPH at St. Peter’s Hospital, New Brunswick. Symptoms of PPH are shortness of breath with little exertion as well as fatigue, chest pain, dizzy spells and fainting.
Vandenburg was lucky because, by the time she was diagnosed, her heart had begun to enlarge, which would have been fatal if not caught in time. PPH was considered a terminal disease until about 10 years ago. New medications work for some patients like Vandenburg. In 2005, she started a drug called Ravatio, initially prescribed for adults with hypertension. Vandenburg took the medication orally but still had to use the IV pump for blood thinner.
Vandenburg lives with her father and grandparents, Jim and Diane Zalewski, who used to own the Kipper Z, a restaurant in Avalon. They held many fundraisers over the years, donating over $50,000 to the Primary Hypertension Association, PHA.
Vandenburg started college last year but had a small chronic cough that she thought was allergies. However, the lung transplant team showed her she was rejecting her lungs.
“Five years out we thought we were pretty safe,” Diane Zalewski said. “Julia did so well after the transplant that the doctors joked she could be their poster child. Unfortunately four months later her medications stopped working, and she was listed for a bilateral lung transplant right after Christmas. Four months later she got her ‘Gift of Life’ with the transplant.”
Vandenburg did well from the beginning and the family was hopeful. Vandenburg was determined to get through her first year of college, but, within six weeks, she realized that it would not happen. The prescribed treatment, called photopheresis, requires many hospital stays.
To support the treatment, doctors put a port in Vandenburg’s upper chest and several times a week she goes to Children’s Hospital in Philadelphia, where they access the port in order to perform the procedure. Via a line connected to the port, doctors withdraw a little over two liters of blood from her body. As the blood goes through a machine, they laser the white blood cells and return them to her body. The lasers remove the inflammation in the blood cells that are attacking Vandenburg’s lungs. Since they can only remove a small amount at a time, the process takes many months.
“It seems to be helping her,” Zalewski said. “The college put her on medical hold. We’re hoping the scholarship money will still be there, but, if not, we are all determined to make her wish of becoming a nurse come true, whatever it takes. Julia is very determined and never lets anything get in her way. The doctors feel she is in remission at the moment; they have stopped further damage but can’t restore what was lost.”
Hopefully, Vandenburg will remain in remission; otherwise, she will be listed again for a bilateral lung transplant. Vandenburg said since she was sick at age two, she hasn’t known any other life.
“As I grew up and began to mature and miss more school before the transplant, that’s when it was becoming hard to handle,” Vandenburg said. “I couldn’t do the activities the other kids were doing, but, with the help of my father and family, I made it through. Now it’s harder to deal with. I had to leave college and put all of my faith into the new treatment. But I think of the younger children and adults who have it a lot worse than I do. My father taught me never to pity myself with the hand I was dealt, and I am not going to start anytime soon. The talk of having another transplant in the future does scare me, more about the aftermath of the transplant. I’ve learned that with a second transplant, some complications such as worse scar tissue and other issues may come.”
Vandenburg maintains a positive outlook and says she just wants to get through nursing school and get to work as soon as she can. “Spending so much time in the hospital growing up, I had the opportunity to have friendships with many nurses and doctors,” she said.
“I know the fears of chronically-ill children so I think I would be a good nurse and valuable addition to any team. My advice for a chronically ill child is to never give up, even if you feel that everyone around you has given up. I’ve seen kids whose parents or doctors give up after one treatment. I would also give them the advice my father gave me when I started to take over my own medical care. He told me don’t worry until the doctors say to worry, and even then do not worry too much. That really does help with the stress process. As long as you have faith in your doctors and take one day at a time, it makes it a lot easier.”
For more information on Locks of Love call 888-896-1588 or email: info@locksoflove.org. Write to Locks of Love, 234 Southern Blvd., West Palm Beach Fla., 33405.
To contact Debra Rech, email drech@cmcherald.com.