November 29, 2006
When Christopher Hanold, Jr., 9, dons his basketball uniform this week, it will be a major step. Because, although he is an avid sports enthusiast, taking his first toss out on the court signifies a big move in the life of a little boy who has, all too often in his short life, had to put his dreams on hold.
Christopher, who suffers from an extremely rare bone disease called lymphangiomatosis, which some doctors say is the same as Gorham's Disease, or "vanishing bone disease" has had to face obstacles far beyond those of his peers. A vascular anomaly, Christopher's disease causes his bones to fill up with lymphatic fluid, which, if not drained, will burst like an aneurysm.
"There is no treatment, and there is no cure," said his mother, Melinda Carrig-Hanold.
When Melinda Carrig-Hanold and her husband, Christopher Hanold, received the diagnosis, their son was only two years old.
The seven years since have been a series of experimental treatments as the family traveled to Boston in search of answers.
When Christopher's story was first chronicled in the Traveler Watchman two years ago, readers opened their hearts to his plight. Today, a community is once again reaching out to embrace one of their own as a fundraiser is planned this Friday at the Soundview Restaurant in Greenport to meet the family's mounting medical expenses.
In the past year, Christopher, who has three siblings — Shannon, Colin and Justin — has faced new hurdles. When his doctor relocated to New York City, the family was strapped with a new set of expenses. In the past, travel expenses on the Cross Sound Ferry were donated by the company, and Boston hotels had medical rates. In New York, a two-night stay is required in pricey hotels. And, said Carrig-Hanold, parking costs in New York are prohibitive. "All in all, it's almost $800 for two days," she said.
The family is also facing a $30,000 hospital bill for procedures not covered by insurance during their last two stays.
But an even more daunting dilemma shadows the family. Christopher's physician has decided to stop his experimental procedures for a while. "She told us that we can't keep doing this to him indefinitely," said Carrig-Hanold. "We can't just keep putting him under anesthesia every eight weeks without worrying about long-term effects. He vomits for 18 hours afterward, and he loses his appetite for two weeks."
The doctor will not touch Christopher's spine, which is covered with lesions. Her decision to put the procedures on hold has left Carrig-Hanold with mixed emotions. "I feel desperate again," she said. "I guess I'm looking for a miracle."
Carrig-Hanold plans to contact another doctor in Canada whom she's heard treats her son's condition. If he agrees to take her son's case, Friday's fundraising event will offset costs.
Carrig-Hanold, who has family roots in East Hampton, is praying that traveling to Canada will prove an answer to a prayer. "Maybe it will be a new journey that we are about to embark upon."
As a mother, she will do whatever it takes to save her son. "You would give your life for your children," she said. "If someone said there is nothing more we can do, it makes you feel panicky, desperate. It's very discouraging, always having doors closed in our faces. Just for once, I want someone to say, 'Oh, I know what to do.'"
As for her brave fourth-grader, Carrig-Hanold says he never complains, never expresses pain. "When he asks us what's going to happen to him, that's what kills you. I'm as honest as I can be without scaring him."
But what bothers her boy the most is wanting to be a regular kid. "He gets very frustrated. Really, in all of his heart, all he wants is to be a nine-year-old and play sports."
That's why, she said, despite the reservations of doctors, she signed her son up for basketball. After speaking to the coach, he assured her that it should be safe for him to join the team. "In the big picture, what is the point of me not letting him do things?" she asked. "If one day he's not ever going to be able to do this, what's the point of not letting him, now while he can?"
A fundraiser for Christopher will be held on Friday at the Soundview Restaurant in Greenport from 5 to 10 p.m. Tickets are $25 for adults, $10 for kids 12 and under. The event will feature a DJ, a 50/50 raffle and prizes donated by local businesses, including four tickets to a Giants/Phillies game, along with clubhouse passes and a North Fork restaurant's "best-ever" tailgate party. For more information, call Rachel at 477-1910 or the Hanolds at 765-5213.