Honoring Cristin's memory, and fighting a lethal disorder

NEIGHBORS

February 12, 2004|By Carole W. McShane | Carole W. McShane,SPECIAL TO THE SUN

DILBERT THE dragon is pale green, stands 3 inches high and weighs 2 ounces. The creation of Cristin Gildea, Dilbert has magical powers, but when he comes face to face with the wicked monster Lokfor, he relies on the power of love to subdue his foe.

Cristin, a pupil at St. Louis School in Clarksville, suffered from primary pulmonary hypertension when she wrote her little book, Dilbert the Dragon. She was in seventh grade when she died of complications from a lung transplant in March 2000.

This month, the St. Louis School community will honor her memory with its third "Hoops, Hops and Hope" fund-raiser.

Cristin's sister, Rachel Gildea, will graduate from eighth grade at St. Louis School this year. She and her schoolmates hope to raise money for the Pulmonary Hypertension Association; they also want to raise awareness of the treatable but incurable disorder.

Children and teachers at St. Louis School gathered for the kickoff assembly yesterday.

The Kangaroo Kids jump-rope team donated its performance, and Abbie Pfau, a third-grader, was anounced as the winner of the "Hoops, Hops and Hope" T-shirt design contest.

For the next two weeks, the children will fulfill their pledges by jumping rope and participating in basketball events coordinated by gym teacher Lee Smith and her assistant, Kate Corriveau.

Cristin, the daughter of Donna and Gil Gildea, was diagnosed in 1996 with primary pulmonary hypertension, a complex disorder of high blood pressure in the lungs.

When pulmonary hypertension occurs without a known cause, it is called primary pulmonary hypertension or PPH. Each year, about two people per million fall ill because of it.

According to the Pulmonary Hypertension Association in Silver Spring, pulmonary hypertension is under-diagnosed because early symptoms often mimic other diseases, such as asthma. The average waiting time for diagnosis is three years.

"Awareness saves lives," said Cara Ugolini, the association's manager for advocacy and awareness.

In 1990, when the association was founded, there were fewer than 200 diagnosed cases in the United States; now there are more than 100,000.

The "Hoops, Hops and Hope" fund-raiser helps raise awareness of PHH.

"When we did our first `Hoops and Hops' in 1998, Cristin educated the different classes and talked to them about her illness and the medication," said Terry Weiss, principal at St. Louis School. "She was very forthcoming about her illness."

Donna Gildea said, "For Cristin it was so important to help other people. She was truly such an incredible person.

"She did want to make a difference in the disease and was very selfless about the whole thing."

Some progress is being made in treatment. According to the National Heart, Lung and Blood Institute, there were no treatments specifically for pulmonary hypertension until 1996, when the average life expectancy was six months to two years. Now, there are three FDA-approved treatments and 50 percent of patients live more than five years after diagnosis.

Cristin continued with her classes at St. Louis School after she was diagnosed.

"Cristin was unbelievable," Weiss said. "When she was diagnosed in fourth grade, she had to wear a backpack with a pump that administered her medication intravenously. It was like part of her uniform. She was a trooper and would hang in there as best she could."

After three years, a more aggressive treatment was prescribed.

"With PPH, you get to a point where you can't fight that disease anymore and you go to the next step, which is a lung transplant," Donna Gildea said. "A lung transplant is one of the rarest and most difficult of organ transplants."

Cristin had her lung transplant at Children's Hospital of Philadelphia in June 1999.

"Throughout all the phases of [her] treatment, the whole St. Louis School community was so supportive in helping keep Cristin involved in school," Donna Gildea said.

"The principal and school nurse would come to Philadelphia regularly, bringing books and greetings from her classmates," she said. "Trash bag-sized bags of mail from children in all the parishes around Maryland came for Cristin in Philadelphia. The letters kept Cristin's hope and spirits up."

Cristin wrote Dilbert the Dragon while she was waiting for a second lung transplant at Children's Hospital, Donna Gildea said.

Cristin wrote: Dilbert was a dragon and there was no denying that, but he was a special dragon, and you couldn't deny that either.

"Her dream was to be a writer," her mother said.

Donations to Hoops, Hops and Hope may be sent to St. Louis School, 12500 Clarksville Pike, Clarksville 21029. Checks should be made out to the Pulmonary Hypertension Assn.

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