August 30, 2006
Small Town Support for Sebastian
Eleven-year-old Southold resident Sebastian Hildebrandt loves video games, dinosaurs and riding his bike. Like most kids, he's gearing up for a brand new school year. But, unlike his classmates, Sebastian's summer vacation wasn't spent entirely at play, pitching baseballs in the sunshine or playing tackle out in the open fields — he is unable to engage in contact sports. Instead, Sebastian traveled to Indiana earlier this month, where he embarked upon a clinical trial that could one day change his life forever.
Although Sebastian looks like any other boy his age, he suffers from Neurofibromatosis Type 1 (NF1), a condition that causes tumors to grow on nerves anywhere on or inside of the body. A genetic disorder caused by a mutation to a gene, NF also causes "a whole range of other problems," said his mother, Laurie, including brain tumors, hypertension, strokes, scoliosis, learning disabilities and bone deformities. "Currently, there is no cure," she said.
Laurie and her husband, Wayne, who have another son, Walter, 7, have been stoic, dealing with their son's illness silently since he was diagnosed shortly after birth.
But faced with mounting medical and travel expenses after Sebastian was one of only 20 children accepted into a clinical trial program at the Riley Hospital for Children in Indianapolis, Laurie reached out to local charitable organizations in a letter asking for assistance.
"The hardest thing of all of this was asking for help," she said. "We have dealt with this on our own for 11 years, and nobody knew. It's not like I walk up to people and say, 'Hi, I'm Laurie. This is Sebastian, and he's sick.' You don't do that."
But once Laurie took the first step and asked for a helping hand, legions of local angels have stepped up to support her, contributing over $6500 in donations so far, and helping to organize a September 28 fund-raiser.
Laurie said the clinical trial, which Sebastian began recently, is based upon an oral chemotherapy drug, Gleevec, a drug that's been successful in treating leukemia and other cancers. "The hope is that this drug can shrink his tumors, buying him some time until further effective treatment can be found," she said.
But although the drug itself is covered, other expenses, including travel to and from Indiana, hotel stays, doctor visits, lab work, and MRIs, are not; the Hildebrandts' insurance company has refused to pay for the clinical trial. While they are appealing the ruling, a final decision could take months.
And that's where the community has opened their arms, embracing Sebastian and his family with support and monetary pledges.
"We live in a great place. I've had a lot of people reach out to us," said Laurie.
As a new mother, Laurie knew something was amiss when she took her baby to the pediatrician. "I commented that he had an awful lot of birthmarks," she said. Later, Laurie learned that a classic sign of NF are skin tumors just under the surface of the skin, as well as brown spots, called café au laits, that look much like coffee-colored birthmarks on the skin.
Despite his diagnosis, Sebastian has lived a normal life, attending Southold elementary school, where, because of NF, he grapples with learning disabilities, including difficulties with reading comprehension. "He's pretty much, in every way, like every other normal 11-year-old kid," said Laurie. "He's just a kid that's got tumors."
But the tumors, some of which grow on sensory nerves in Sebastian's neck, hurt. To alleviate the pain, Sebastian had his first NF-related surgery in January to remove them.
The goal of this treatment, said Laurie, is to shrink Sebastian's plexiform tumors and alleviate some of the pressure on Sebastian's spinal chord, buying him some time without any further surgical removal. "Any surgery involving the spinal chord is dangerous," said Laurie. Other risks include paralysis, stroke and loss of function in Sebastian's hands and feet.
Although Sebastian's condition can be fatal, said Laurie, "the good thing is that there's only about a five to six percent chance of the tumors ever turning cancerous. They're not malignant."
But despite the fact that life isn't easy — because he is small for his age, only 55 pounds, "he's really tiny, and tends to get teased because kids don't understand" — Sebastian has a huge heart. "He's very compassionate towards other kids with disorders. He always tell me he feels bad for other children."
And at school, Sebastian is "a people person. He likes to be a leader. They call him Mr. Mayor, because he likes to tell everyone what to do."
But growing up too fast has taken a toll. "He worries about unusually strange things, like how much gas is in the car, and if our luggage is going to get lost in the airport. He worries about adult things, things kids shouldn't have to be concerned about."
Reaching out, though, has helped Sebastian to realize he's not alone; another little boy with NF lives only blocks away. And it's brought a public outpouring of love from a community that cares. "I've always known we lived in a great community," said Laurie. "So I knew if I asked for help, people would respond. People don't know unless you ask."
One day, Laurie would like to set up a foundation for other kids with NF. But for now, the focus is on Sebastian. "Our goal is to keep Sebastian walking," she said. "He does not want to spend the rest of his life in a wheelchair."
A dinner and Chinese auction fund-raiser will be held for Sebastian on September 28, beginning at 4 p.m. at the Fisherman's Rest in Cutchogue, where his grandmother Roxy, is a manager. Tickets are $15, and can be purchased in advance or at the door. For more information, call 734-5155.
Donations can be sent to: Friends of Sebastian, Laurie & Wayne Hildebrandt, c/o Bridgehampton National Bank, 218 Front Street, Greenport, NY 11944.
For more information on his disorder and on donations, visit Sebastian's website: www.caringbridge.org/visit/sebastianhildebrandt.