ATV association continues to aid ailing children’s hardship

By CHARLIE BUTERBAUGH

BETHEL, NY — Unlike most mothers who carry their newborn children home a day after labor, Renee Lowe has had to leave Westchester Medical Center time after time without her daughter.

Renee drives to the hospital every day—a one-and-a-half-hour trip from where she lives and works in Woodbourne—to watch over Kylie Smith-Lowe, who now weighs two pounds, 10 ounces, thanks to the nourishment she gets from an electronic flow machine. “She has been gaining weight, so they must be feeding her well. I haven’t had the chance to bottle-feed her yet,” Renee said.

Since she was born premature at a mere pound and a half, Kylie’s condition has improved. When surgery successfully closed a hole in the infant’s heart two weeks ago, doctors told Lowe that her daughter should be able to come home at the end of November.

“I’m starting to feel comfortable now. I’m not so worried,” she said.

Last spring, Lowe’s story captured the attention of five men who organize a charity ATV ride through Sullivan County every year with help from the Gerry Foundation, Woodstone Development, Boy Scouts of America, Iroquois Hunting and Fishing Club, Excelsior Hunting and Fishing Club, the Sullivan County Parks Commission, Eldred Preserve, Hector’s Inn and several property owners. The Sullivan County ATV Association plots the annual 50-mile ride in which 600 riders participated this year. Their admission fees pay the bills and produce a significant profit, the entirety of which the association hands to families with sick children.

On Thursday, September 23 at Hector’s Inn, where the race began on September 6, Lowe accepted a check for $8,500. Additionally, association directors Jay F. Meddaugh Sr., Anthony Poli, Mike Cooper, Ed Houman and Jay F. Meddaugh Jr. gave an $8,500 check to Robert and Janna Worden, whose six-year-old daughter, Brianna, was diagnosed with neurofibromatosis (NF), an incurable genetic disorder, when she was four months old.

Little treatment—if any—exists for NF, explained Janna Worden, who remained within arm’s length of Brianna the entire evening at Hector’s, sometimes taking time to massage her daughter’s arms—they suffer irritation from tumors growing in her body along nerve passages.

Worden said the key is for doctors to know where the tumors are, and if they spread to Brianna’s brain or her spinal chord, serious measures need to be taken. Bi-annual MRIs provide the knowledge, but Brianna’s future remains uncertain, she said.

“There are no books that say what will happen to her. The biggest mistake I made in the beginning was reading too much. I really thought that I could figure it out,” she said.

Worden has devoted time to creating a support group for parents whose children have NF, which occurs in one out of every 4,000 births according to the National NF Foundation. Worden praised their website (nf.org) for its concise presentation of a complicated disorder.

Brianna will need a kidney transplant by the time she is 10 years old. Asked how she and her husband manage the hardship, Worden said they have both worked with children with cerebral palsy and other disabilities, so they are prepared to address Brianna’s needs. Then she added, “Now, Brianna is my life.”

The association also gave $1,000 to the parents of Amy Pace, a ten-year-old who recently died of cancer.