Boy Scout Troop 45 and Cub Scout Pack 41 are hosting a pancake breakfast fundraiser to help make their activities sweeter.
The breakfast will take place on Sunday, May 17, from 8:30 a.m. until noon, at the Port Jefferson firehouse on Maple Place.
Scouts are selling tickets for the breakfast. Those tickets are $5 each and may be purchased at the door on the day of the breakfast fundraiser. Children under 6 are free.
All proceeds from the pancake breakfast benefit troop and pack activities and help defray the cost of summer camp for individual Scouts.
Both the troop and pack are sponsored by the First Presbyterian Church of Port Jefferson.
Volunteers help out in the garden at the Bethel Hobbs Community Farm, located on Oxhead Road in Centereach. File photo
By Jenni Culkin
A small Centereach farm, about 11 acres in size, is reaching out to the community to raise the funds necessary to continue doing its good work.
The farm has been growing vegetables and other crops to donate to food pantries and people in need since 2007, according to Peter Castorano, one of Bethel Hobbs Community Farm’s caretakers, who lives in the sole house on the property.
“Ann started it all,” said Castorano.
That Ann is Ann Pellegrino.
The Centereach woman discovered the farm, which wasn’t too far from her house, after she sought a place to continue gardening and donating the crops to the poor.
Former Brookhaven Town Councilwoman Kathy Walsh and farm Director Ann Pellegrino put their backs into it at Hobbs Farm. File photo
Alfred Hobbs willed the farm to the Bethel AME Church, its owner since 1955. Pellegrino decided to take over the farm’s maintenance, although it is still owned by Bethel Church. She is now the vice president of the farm, which donates tens of thousands of pounds of crops to those in need each year.
The farm has recently experienced an invasion by wild deer, which are eating some of the farm’s crops. The deer eating the crops has significantly lowered the overall productivity of the farm.
“It costs a lot to maintain the farm,” Pellegrino said.
For this reason, an inaugural 4-mile run, which will take place on Saturday, Aug. 22, at 9 a.m., will help raise money for a higher fence to prevent further invasion by the deer population. Advanced registration is $20. In addition, it will cost $5 for children to participate in the Kids Fun Run. There will be awards for runners, music and raffles at the event.
“It’s a really great cause,” Councilman Kevin LaValle (R-Selden) said. “Hobbs farm is a hidden jewel in the area.”
According to LaValle, the run has been made official by USA Track & Field. It will be timed and kept track of like any other official race.
“We would like to make this a yearly event,” Pellegrino said.
The inaugural run is not the only way to make a difference.
There are only approximately eight regular volunteers at the farm, including Dottie Meade, Elaine Gaveglia and Jason Castorano. Castorano finds himself fixing the farm equipment and handling the maintenance of heavy machinery, like the tractor. Meade helps out with a plot of land designated to educating young children and helping them learn and grow.
Meade said regular volunteers included the Green Teens from the Middle Country Public Library, volunteers from Long Island colleges like Suffolk County Community College, Stony Brook University and Adelphi University and the Boy Scouts and the Girl Scouts.
“We need volunteers, we need sponsors and we need the word out,” Pellegrino said.
A local family came out for breakfast to support a great cause. Photo by Jenn Intravaia Photography
By Ernestine Franco
More than 160 people started their day recently at the Butterfly Breakfast for a Cure fundraiser held at Applebee’s in Miller Place.
The $4,000 raised on Saturday will benefit DEBRA for America, an organization that provides assistance and education to families with children born with epidermolysis bullosa (EB). Young people who suffer from this disease are called “butterfly children” because their skin is so fragile it blisters or tears from friction or trauma.
After the event, Donna McCauley, who organized the fundraiser, expressed her gratitude to everyone who participated in the fundraiser, “When [my daughter] Kelly asked to take on a fundraiser for DEBRA of America, we were so proud of her for taking such an interest to give back to this wonderful organization that has supported our family for so many years. Living with EB is not easy and often people ask me how I manage to be so involved in so many things. All of my servers worked out of the goodness of theirs hearts and for service hours and did a great job. In case it wasn’t obvious to all yesterday by [the number of people who came to] Applebee’s … It is because of the love and support of my fantastic family and a group of friends like all of you. I am truly humbled by the turnout.”
If you would like to donate to help find a cure, please visit www.DEBRA.org.
Rob Marianetti is raising money to help fund his daughter Kayla’s care. Photo by Elana Glowatz
A smile, a swallow or a step mean a lot to Rob Marianetti.
It was not long ago that his daughter was unresponsive, following a bathtime incident, and doctors told him there was no hope she would get better. But Marianetti isn’t giving up on Kayla, and coming up on her third birthday she can make some sounds and move her arms and legs.
“I’ve been on a mission to get my daughter back,” he said.
When she was 17 months old, while Marianetti was at work — for Setauket-based Hurricane Tree Experts — Kayla was having a bath in her Port Jefferson Station home and was left unattended for eight minutes, the father said. She was found floating and unresponsive.
Marianetti rushed to the hospital to see Kayla while doctors were working on her. He said he was trying to get into the room with her and was banging on a door to the point where a police officer had to intervene. He learned a few weeks later, he said, that his daughter came back to life while he was banging.
“She was blue and she was done. She was done — and she came back.”
Kayla spent time at St. Charles Hospital and Stony Brook University Hospital, and Marianetti and his wife — who is no longer “in the picture,” he said — got the little girl started on different therapies right away, so she would not deteriorate.
Rob Marianetti is raising money to help fund his daughter Kayla’s care. Above, Kayla before her bathtime accident. Photo from Rob Marianetti
The whole time Kayla was in the hospital, Marianetti never left her side, the father’s aunt, Susan Calvi, said: “Slept there every day.”
Out of all the nation’s experts Marianetti saw, he said, just one, neurologist Dr. Chris Sinclair at John T. Mather Memorial Hospital, encouraged him to fight.
Sinclair said he’s seen a similar case of brain injury before, in which a child was perhaps even worse off than Kayla in the beginning but after a couple of years was walking and talking.
“So I’ve seen it before but I also know how flexible, in a sense, the brain of a young child is.”
Sinclair explained that there are connections between brain cells that allow the cells to communicate with one another, and in Kayla those have become damaged. But those connections can be regrown in a developing brain.
“When someone’s so young, [the future] is a lot brighter than it would be for someone who is an adult because the brain is still developing,” Sinclair said. “I think the sky’s the limit for her.”
Kayla has multiple therapy appointments each day, whether it’s hyperbaric therapy, which involves putting her in an oxygen-rich environment; physical therapy, to move her toward sitting up, standing and walking; vision therapy, as neurological issues have made her legally blind, even though her eyes themselves are fine; or speech therapy, which is used both to teach her to communicate and to eat on her own.
“By me doing all this stuff, it’s friggin’ working, man,” Marianetti said. Kayla has stood up, laughed, swallowed a small amount of pudding and taken a few steps. “Now remember, she couldn’t move a year ago. … I have hope.”
One big hurdle for Marianetti, however, is money. He’s gone through his savings, he said, and Kayla’s therapy appointments cost $8,000 a month. Then there’s other medical costs, as well as living expenses like food, diapers and electricity.
The treatments are expensive, the dad said, but “how can I not continue what I’m doing when she’s making progress?”
He set up a fundraising page, at www.gofundme.com/n19qgc, to ask for help. As of Wednesday morning, the fund had reached $18,000.
His goal is to have Kayla at least be able to walk, talk, eat and see on her own.
“I’m not leaving her like this,” Marianetti said. “I’m going until either she gets better or I die.”
A scene at last year’s dance. Photo from Lynn Ruvolo
The Lewis Oliver Farm will host its 19th Annual Friends of the Farm Barn Dance on Saturday, April 11, at St. Philip Neri Parish center in Northport at 7 p.m.
The event, which features an evening of fun, dancing, food, raffles and door prizes, benefits the many animals of the farm, located on Burt Avenue in Northport. Those animals include resident goats, sheep, chickens, Annabelle the cow and more.
This year’s event features a few new surprises, according to a press release by organizers. Professional square dancer Lee Kopman, with the assistance of Lilith Kopman, will be teaching the art of square dancing between 7 and 8:30 p.m. Jeff Mucciolo and the Moonshine Band, with special guest singer (and farm volunteer) Valerie Sauer will be back entertaining all. Also, the event will feature a flipbook photo booth — where, for a nominal charge one can create a personalized unique flipbook with moving images.
The fundraiser will also include a silent auction bid for prizes such as one-of-a-kind art pieces and tickets to upcoming events.
For dinner, this year’s menu includes dishes from local restaurants such as Maroni Cuisine, Aunt Chilada’s, Three Amigos, Deli 51, Batata Café and Copenhagen Bakery. Beer, wine, coffee and dessert are included in the ticket price of $50.00. To enhance your beverage of choice, a complimentary etched wine glass or beer mug will be distributed to use that evening and bring home as a keepsake.
This is the Friends of the Farm’s main fundraising event. All of the donations and proceeds go toward the feeding and care of the animals and preserving the farm.
For tickets or additional information, call Lynn at 631-757-9626 or Pat at 631-757-8065.
Mackenzie Wardrope with baby Addy and husband Gregory. Photo from Mackenzie Wardrope
By Jenni Culkin
Her struggle has become one that is shared with the entire community.
Residents have been giving comfort, hope and encouragement to 1-year-old Adelaide “Addy” Marie Wardrope and her family as she battles a rare genetic disorder rarely seen by area doctors. It was recently discovered that Addy, the granddaughter of Three Village resident Bridget McCormick, has a mutated SCN8A genome and is one of only a handful to ever be diagnosed with such a condition.
“She gets horrible seizures where she will hold her breath for two minutes and turn purple,” said Mackenzie Wardrope, Addy’s mother, “It’s been the hardest experience of my life.”
Wardrope now lives in Maryland with baby Addy and her husband Gregory but grew up in the Three Village community and still checks in with her mother, McCormick, who works in the soup kitchen at St. James Roman Catholic Church.
According to the Frontiers in Genetics academic journal, “the mutation causes seizures, developmental delays, and other neurological complications.” But even through the struggle of conditions, Wardrope remains extremely optimistic.
“She’s an amazing fighter,” Wardrope said about her daughter, mentioning countless hospital visits where Addy would try to lift her head up even under sedation.
Wardrope said she credits much of her early support to a Facebook page dedicated to Addy, where other families going through similar situations as Addy find inspiration to be courageous and fight through the disease.
The family’s tie to the community has given them a strong support system, Wardrope said. Approximately 3,000 families attend the St. James Roman Catholic parish and many of them are involved with helping with or donating to Addy’s fund.
One of Addy’s supporters, Tony Casale of St. James Roman Catholic Church’s and the Kiwanis Club of the Three Village-Brookhaven Township, has been acting as Addy’s Long Island advocate. Casale works with McCormick at the church.
“A lot of people from the church have been very generous since they started the fund,” Casale said.
The fund, which is contributed to by the GoFundMe.com website, has raised $9,835 as of Wednesday.
“Hugs and kisses to the Wardrope family. You’re in my thoughts and prayers,” Pamela Oelerich posted on GoFundMe with her $50 donation.
In addition to Oelerich’s kind donation, 93 other people left money with the fund within four months. Some left sweet messages while others made their donations anonymously. No matter what the intention of the donor, each donation is just one more step toward peace of mind and ease for Addy’s parents in Maryland, her family said.
The Kiwanis Club and Ward Melville High School’s Key Club have also been a tremendous source of leadership and advocacy for Addy’s situation.
Kyra Durko, president of the Ward Melville Key Club and a Village Times Herald person of the year for 2014, has also put forth a huge effort toward helping Addy and her family through their times of trouble. She created a website for the events for Addy and has reached out to the Girl Scouts and Cub Scouts in her area, providing the young people with the opportunity to help lead a charitable cause.
“This is what the Key Club is all about,” Durko said about the time she spent planning events for Addy.
The Kiwanis Club also plans on raising approximately $1,000 during their family game night fundraiser, Casale said.
“Thank God for the Key Club and the Kiwanis,” Casale said about the events that are being orchestrated in Addy’s honor. “Even if we don’t solve the problem, there’s an idea of giving a little bit of hope to this family.”
To contribute to Addy’s medical fund, visit www.gofundme.com/addysmedical. Or, attend the talent show in Addy’s honor at Ward Melville High School on Feb. 26 or the family game night on Feb. 28 at the Setauket Neighborhood House.
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