Carol Higgins Clark

higgens_smallBAY HEAD -- Area bibliophiles will have an opportunity next week to meet a well-known author and, at the same time, help in the search for a cure for Fibrodysplasia Ossificans Progressiva [FOP] -- an extremely rare, progressive disease that usually strikes in early childhood.

Mystery writer Carol Higgins Clark will visit All Saints Church on Aug. 27 for a brunch, speaking engagement and book singing to benefit the Weldon FOP Research Fund, named for 11-year-old Whitney Weldon, whose family spends their summers in Bay Head.The diagnosis Whitney's mother, Hillary Weldon, said Whitney was diagnosed with FOP as a 9-year-old. According to the International Fibrodysplasia Officians Progressiva Association [IFOPA], the earliest documented cases of the disease -- in which soft connective tissue progressively turns to bone -- date back to the 17th century. FOP is rare, affecting an estimated one in 2.5 million people. Mrs. Weldon said research thus far has attributed the cause of the disease to a "mutated gene.""It's [the disease] a freak of nature," she said. FOP, which worsens as affected people age, can impact the neck, spine, chest, shoulders, wrists, elbows, hips, jaw. and ankles. The disease affects mobility as muscles, tendons and ligaments are slowly replaced by bone. "FOP is the only known condition where one organ -- muscle -- changes to another organ -- bone," Mrs. Weldon explained. "There's a whole second skeleton growing in Whitney's body."Not only is there no cure for FOP, Mrs. Weldon said, but there is also no treatment to slow its progression."If no cure is found, Whitney will become ... immobile."Although FOP itself is not usually terminal, Mrs. Weldon said many people afflicted with the disease die as the ever-growing bone puts additional pressure on vital organs such as the lungs or heart.Children stricken with FOP appear normal at birth with the exception of, as Mrs.Weldon put it, "a short, stubby [big] toe."She said in normal child development, bones grow from the head to the toes then growth stops. In children with FOP however, "that switch never turns off.""It starts growing from the head down again," she explained.Mrs. Weldon said

Whitney's case is unusual in that most of the estimated 2,500 people who suffer from FOP are diagnosed at a very early age. She said most people diagnosed with FOP begin showing symptoms by the age of 5.On the other hand, she said, Whitney is lucky in that she was not misdiagnosed.She said many children are first diagnosed with cancer before the doctor realizes the child is actually suffering from FOP."You don't want to be misdiagnosed with cancer," Mrs. Weldon said, adding that the effects of surgery to remove the suspected tumor and the subsequent round of chemotherapy can be devastating."FOP explodes," she said, referring to the weakened immune system often associated with chemotherapy. "Surgery is catastrophic.With a little help from their friendsMrs. Weldon's friends, Nancy Plumeri and Darlene Kasten, who also spend their summers in northern Ocean County, have known the Weldon family for six years and are well aware of Whitney's condition."I know the Weldons from home," Mrs. Kasten said. "I'm in Fanwood, they're in Westfield and Nancy's in Scotch Plains. We know each other socially, our kids go to school together."Mrs. Kasten said the idea for the upcoming fund-raiser in Bay Head sprang to mind during a recent visit to Martha's Vineyard.While vacationing there with a friend in July, Mrs. Kasten said she was invited to an event at the Edgartown Yacht Club where Ms. Higgins Clark was the speaker.After the event, Mrs. Kasten said she contacted Ms. Higgins Clark with the idea of having a similar event in Bay Head to raise funds for the research foundation Whitney's uncle, Peter Weldon, established through the University of Pennsylvania in 2001."I thought an author's lunch would be a great idea for here," Mrs.Kasten said. "I called Carol, she thought it was a great idea, and it all just fell into place.""I'm just a guest," Mrs. Weldon, who also has a 13-year-old son named William, laughed. She said the entire event was planned and organized by Mrs. Kasten and Mrs.. Plumeri."They just did it. How nice is that? ... I'm just touched that on their vacation, they would do this."However, to Mrs. Kasten and Mrs. Plumeri, next week's event is simply a way to help a friend."Hillary is the most tremendous fund-raiser for FOP." Mrs. Kasten said."She's made people aware of the disease," Mrs. Plumeri added.As luck would have it, the chance encounter on Martha's Vineyard was not the first time Ms. Higgins Clark had heard Whitney's name. In fact, she used it as the name of one of the primary characters in her latest novel, "Jinxed."Mrs. Kasten explained that Ms. Higgins Clark had spoken to members of the Junior League of Elizabeth and Plainfield two years in a row at the group's literary luncheon."At that event two years ago, she offered the chance to be a character in a novel as a silent auction prize," Mrs. Kasten said.During the event, Mrs. Weldon said, the group spent 10 minutes talking about Whitney and her illness.Mrs. Weldon said she bid on the prize in the auction, in hopes of having Whitney's name included in the novel, but lost."I went up to the cashier even though I lost, but I said I wanted to donate $500 because they talked to the group about Whitney," she said.Mrs. Weldon said the Junior League president at the time, Jackie Cash, told Ms. Higgins Clark about the donation, and the author decided to incorporate the child's name into the book even though her mother had not won the auction.Ms. Higgins Clark's Whitney Weldon bears a striking resemblance to Mrs.Weldon's daughter and family even though the author did not meet with the child as she was writing "Jinxed."Mrs. Weldon said the character in the novel comes from a hippie family in California that owns a winery. The novel's Whitney goes on to become a Hollywood starlet."My husband's fantasy is to own a winery," Mrs. Weldon said.The fictional version of Whitney is pretty close to the mark as well."There's always 'the race car driver' in the family," Mrs.Weldon said. "The one who raises hell. Whitney's my race car driver. She likes fast cars, fast rides, it was always 'Faster mommy faster!' But now she can't because of her illness.""She [Ms. Higgins Clark] wrote the book without knowing Whitney," Mrs. Weldon continued. "This is something she'll have for the rest of her life, knowing she was a glamorous starlet in a book."Coping with the diagnosis In the two years since her diagnosis, Mrs.Weldon said Whitney has handled her illness -- and the lifestyle changes it has necessitated -- well. "She didn't talk about it for the first year," Mrs. Weldon said."I had to take everything she loved away from her, gym class in school, her bike ... She can't ride a two-wheeler, she can't climb. She can't have any trauma because her bruises turn to bone."In addition to spending the past two years learning everything she can about her daughter's disease, Mrs. Weldon said she has also learned a great deal about her daughter as a person."It's been hard for her, but I try to keep the hope there for her," Mrs. Weldon said. "I know that as her body fails, she's handling this better than Bill [Whitney's father] and I are. She's funny, pretty and smart, and in my heart I know she's going to be able to handle this.""My job as her mom is to increase awareness and raise money," Mrs. Weldon said. "My job is to try to save my child."Added benefitsIn addition to providing relief to those diagnosed with FOP, Mrs. Weldon said scientists believe FOP research could also lead to medical breakthroughs for other ailments including bone spurs and osteoporosis."If we can find this switch, we can help millions of people with bone ailments," she said.Although Mrs. Weldon, Mrs. Plumeri and Mrs. Kasten said they do not expect next week's event to raise a tremendous amount of money, they hope it will serve to increase awareness."That's the goal," Mrs. Plumeri said."At this point, that's [awareness] as important as money," Mrs. Weldon said. "We want the publicity to guide people in the right direction of where they can get help. Us mommies are pretty powerful."The benefit will be held on Wednesday, Aug. 27 from 10 a.m. to noon at All Saints Church, Howe and Lake avenues, in Bay Head. Tickets are $20 per person, and copies of "Jinxed" will be available for purchase.For more information on FOP or the Weldon FOP Research Fund, visit the web site, www.weldonfop.org.Thanks for reading The Ocean Star!

 

 

What is FOP?

FOP in an abbreviation for Fibrodysplasia Ossificans Progressiva ( fī'brō-dĭs-plā'zhə ŏ-sĭf'ĭ-kānz'  prō'grĭ-sī'və) previously known as Myosis Ossificans Progressiva. 

FOP is a rare and distressing medical condition where bone forms in muscles and other soft tissues of the body.

Whenever extra bone is formed across the joints it restricts movement. It is a progressive disease and there is no cure. It does not effect a persons intelligence. 

FOP affects 1 in 2 million people worldwide. It has no ethnic or religious pattern. 

There has been 700 confirmed cases across the globe from an estimated 2500. 

There are 285 known cases in the United States.

Whitney's Story