EDMESTON – On Saturday, August 9, a benefit for one special little boy has been planned to assist him and his family overcome a hurdle that many of us take for granted everyday – a means of adequate, safe transportation.
The event – billed Jammin' 4 Jesse – will take place at the Norwich Grange Hall located at the intersection of County Road 32-A and Hale Street Extension, just east of the City of Norwich.
For eight-year-old Jesse Rounds, life has never been easy. While still in the womb of mother Hilary, Jesse underwent a prenatal surgery that was necessary for the survival of him and his mother.
“Immediately after being born at Oneida Area Hospital Jesse started having seizures, we were told that he would have to be transported to the NICU at Crouse Hospital in Syracuse – and that he would more than likely not survive the ambulance ride there,” said Hilary. “We decided to have him baptized there in the hospital before his ride.”
That was the beginning. Jesses journey from there has been punctuated with no less struggle as a multitude of diagnoses were handed down from physicians. At all of three months of age, Jesse would be diagnosed with Cerebral Palsy, Epilepsy, Mental Retardation, GERD, Failure to Thrive as well as being legally blind.
In addition to that, it was necessary for a PEG tube to be placed so that Jesse's family could feed him regularly.
While Jesse made some improvement through therapies, he often suffered small seizures that would eventually evolve into a Grand Mal seizure that would set him back from all the developmental strides he had made.
Due to the severity and frequency of Jesse's medical conditions, Hilary has had to devote her life to staying home and caring for her only child, a decision that was fraught with difficulty.
Taking care of Jesse is full time work for Hilary, and it's apparent in an afternoon spent with the two along with some of their close family that everyone is there to support their “miracle child.”
“Things are tight for a family like ours, but we're all here to support each other, we're very blessed in that respect,” said Hilary.
Hilary and husband Jon continuously extend themselves when it comes to caring for their family. In the summer of 2013, the busy couple took custody of Jon's young teenage sister, Mary, and her infant son on top of their obligations to Jesse.
“We ended up making some tough decisions, but we've always done what we felt was right,” said Hilary.
With the number of occupants in their home now increased, the family sought a larger home in the Town of West Edmeston, and Jon found work at Chobani – only a few miles from home which was given careful attention in the event that Jon need to rush home during the workday.
“It's tough for us to what we need to do with the one vehicle that we have,” said a concerned Hilary, “but we've been making due for eight years.”
Currently, the family relies on one vehicle to fill the roll of transporting Jesse to appointments and routine procedures as well as getting Jon to work.
“Jesse desperately needs a wheelchair van so that we may transport him to and from his medical appointments, and that's what the funding and donations from the benefit are going towards,” said Hilary as she did her best to entertain Jesse in the family's living room.
According to Hilary, the financial goal for the family to purchase a used wheelchair-accessible van is approximately $10,000 – “Vans priced less than that usually need some extensive repair work, and we're just not at a place where we can afford to spend more time and money on a van that needs work,” explained Hilary. “If we don't make our mark, we're going to put the money away and keep trying, because this is what we need the most for Jesse right now,” she added.
The benefit is scheduled to run from 11 a.m. to 8 p.m. on Aug. 9. Entertainment by Local Performers Cassidy Lynn and Tim Carr, along with help from Tune Time DJ service will be included. A series of gift baskets and 50/50 raffles will be present, and a buffet-style meal will be provided as well.
Admission price is set at $10 per person and admission for children under age three is free.
“We're try as hard as we can to increase Jesses quality of life, and this is a step in that direction,” said Hilary.
For more information, or to make a contribution, call Hilary Rounds Directly at 373-1451 or email at email@example.com.