Ailing kids benefit from charity poker run

ELDRED, NY — There seems to be no shortage of heart-rending stories. In the wake of Hurricane Katrina, the high tide of human tragedy flooded the world with stark television images of devastation and death. In response to that calamity, Americans have rallied.

When it comes to helping out those in need, it is safe to say that people can be immensely generous and giving. But you don’t have to go all the way to New Orleans to witness people’s empathy or their capacity to give unto others who are in need.

For the past seven years, the Sullivan County ATV Association has run a charity poker run and turned over large sums of money to ill children in need of support. Last year the association divided the tidy sum of $26,000 dollar between Aiden Hanley of Yulan, a two-year-old who had undergone a heart transplant, and Gracie Hillriegel of Callicoon, who suffers from Acute Lymphoblastic Leukemia (ALL).

This year’s beneficiaries are Alec Gildersleeve of White Sulphur Springs and Bryce Rogerson of Neversink. Their courage and the unflinching love of their parents has enabled each one to survive traumatic medical emergencies.

Alec Gildersleeve, the son of Shelly and Guy, suffers from Spastic Athetoid Cerebral Palsy. He was born on January 9, 2003 in the twenty-fifth week of Shelly’s pregnancy. He weighed one and a half pounds. Suffering from internal hemorrhaging and jaundice, he was determined to be deaf and virtually blind. Now at age two and a half he cannot sit up, roll over or focus. He can’t eat regular foods, doesn’t understand the world around him and doctors are uncertain if he’ll ever walk or talk. But Alec does respond to the loving touch of his parents. They are his world, as is his sister Ally, a seven-year-old from a previous marriage.

To hear Shelly talk about Alec is to understand what true love is about. “He saved our lives,” she said. Guy and Shelly considered it a blessing to have this little boy in their lives despite his severe medical issues. Their first child, Ethan, born prematurely on March 20, 2002, lived for only one day.

Remarkably, Alec hasn’t been hospitalized, except for the implantation of cochlear device behind his ear that allows him to hear. Unfortunately, when it is turned on, it sends him into a state of great disturbance. He doesn’t understand the sounds after living in silence.

The Gildersleeves will use the ATV Association’s impending donation to make their home handicapped accessible. Alec will attend the Center for Discovery in January. The Gildersleeves have no intention of putting him into a facility. “He’s our son and we want him with us,” Shelly said.

Bryce Rogerson was born on February 25, 2005. His medical issues began in utero when he was diagnosed with Hypoplastic Left Heart Syndrome. In layman’s terms, that means that the left side of his heart will never function. During her 26th week, his mom, Nicole, went into surgery so that pediatric cardiologists could operate on Bryce’s heart in the womb. Bryce was born at 37 weeks and within 45 minutes he was in the cath lab at Boston Children’s Hospital as doctors worked furiously to increase the blood flow. His parents didn’t see him for the first eight and half hours of his life and Bryce nearly died that day. At twelve days of age, Alec had open heart surgery when doctors performed what is called the “Norwood Procedure,” replumbing his heart to make everything function from the right side. The surgery, performed by Dr. Frank Pigula, was successful, but Bryce will need another operation between 18 months and age three. “He’s doing great,” said Nicole and dad Brian.

Bryce’s eight-year-old sister Dirie dotes on her little brother. “She worries about him and she’s very happy when she’s with him,” said Nicole. Both parents are correction officers at Woodbourne. Nicole has been out of work since before Bryce was born. Money has been scarce, and though they have insurance, the hospital in Boston is out of the network.

Despite his medical complications, Bryce has brought the family joy. “Having Bryce has brought us so much closer.”

Of great concern is the prospect of Bryce contracting even an ordinary cold. “He has no reserve and has already suffered lung damage,” note his parents. By the time he reaches school age, doctors predict Bryce will probably be fine, but for now he has to have a Rotovirus shot every month from October to May.

“Bryce is the happiest baby,” saidNicole, as she acknowledges the prospect that doctors haven’t ruled out the prospect of a future heart transplant someday.

Thanks to the generous donation of this year’s Sullivan County ATV Charity Poker Run, Bryce and Alec, along with their parents, will have a better hedge against life’s adversity. It is uplifting and reassuring that people near and far can find it in their hearts to reach out to others who need a helping hand.