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Stony Brook University women’s soccer team drafted 4-year-old Rylie Laber. Photo from Stony Brook University

Kevin Redding

On July 4, 1939, New York Yankees legend Lou Gehrig stood before 60,000 fans at Yankee Stadium and confirmed his diagnosis of amyotrophic lateral sclerosis and closed his statements by saying: “I might have had a tough break — but I have an awful lot to live for.”

This sort of display of courage and determination in the face of great affliction is now being echoed by a 4-year-old girl named Rylie Laber, a student at Middle Country’s Bicycle Path Pre-K/Kindergarten Center, who loves to play soccer and takes great joy in learning new things in the classroom.

Those who know her best describe her as energetic, loving, happy, competitive and sassy, with a great laugh. Her spirited personality serves as the ultimate remedy for the rare genetic disorder she’s suffered from since she was 6 months old.

Stony Brook University women's soccer head coach Brendan Faherty places a cap on Rylie’s head after she was drafted. Photo from Stony Brook University
Stony Brook University women’s soccer head coach Brendan Faherty places a cap on Rylie’s head after she was drafted. Photo from Stony Brook University

Called Shwachman Diamond Syndrome, the disorder causes bone marrow failure, pancreatic insufficiency, malabsorption of food and vitamins, and growth difficulties. For most of her life, Rylie’s day-to-day schedule has consisted of countless doctor and hospital appointments, infections, taking medications with every meal, bruising easily, mouth sores, and a lot of dehydration due to fevers. Even two hours of mindless fun at Chuck-E-Cheese when she was only 2 years old led to a miserable three months of being sick with a chronic cold and fever.

But since late August, when she was taken under the wing of SUNY Stony Brook’s women’s soccer team through the Team Impact program, she’s turned over a new leaf and has something to consistently look forward to. In turn, her involvement as an honorary team member has made life better for her family, and the team itself has been impacted greatly by her fun-loving presence.

Rylie’s grandmother Mary Balint, who has full custody, which she shares with Rylie’s father, said that even with her illnesses, Rylie’s always been very cheerful and happy, and that’s only increased tenfold since joining the team.

“She is pushing forward and she absolutely loves her team,” Balint said. “Just last month she had asthmatic bronchitis and every day she was like ‘I’m not letting this stop me. I’m going to practice. I’m going to be with my team, I’m going to do what I have to do,’ so she’s definitely fighting through whatever she needs to fight through to stay with this. She’ll do anything for them. It’s just made her so much stronger.”

Because of how rare Rylie’s illness is, every other year she and Balint journey to Camp Sunshine — which provides retreat and support for kids with life-threatening illnesses and their families in Maine — for a medical conference. This is where Balint first heard about Team Impact, the organization that drafts kids to become members of local college athletic teams.

Initially, as Balint was looking into the program and submitting Rylie’s application, she was told that they generally didn’t start kids until they were 5, but that was until they learned that she had a special interest in soccer — which she’d been playing since she was 3.

Rylie Laber stretches with the Stony Brook University women’s soccer team. Photo from Mary Balint
Rylie Laber stretches with the Stony Brook University women’s soccer team. Photo from Mary Balint

That’s when the organization touched base with Brendan Faherty, Stony Brook’s new head coach of the women’s soccer team, who, along with the student athletes, took to her immediately. Rylie joins the Seawolves in the weight room, goes to practice and games, stretches with them on the sidelines, and kicks the ball. As Balint says, everything they do, she does. According to Faherty, it didn’t take long for Rylie to be herself among her new friends and teammates.

“In the beginning, she was a little bit shy,” he said, “but that lasted about five minutes. She’s super outgoing. She just wants to talk to everybody — goes from one player to the next — and she’s got a great attitude, and really cares about everybody in the program. … We try to spend as much time as we can with her. We went to one of her soccer games and she’s actually really good. She’s super aggressive on the field and she scores a lot of goals and just seems to really love soccer.”

In terms of Rylie’s impact on the students on the team, Stony Brook senior and teammate Lindsay Hutchinson said that Rylie was with them for almost the entire season, and every day the Seawolves spent with her was guaranteed to be a good day. The Stony Brook team even improved upon its record this season with Rylie by their side.

“She just kind of puts everybody in a good mood,” Hutchinson said. “Personally, it gives me a greater appreciation of life, because Rylie just walks around like the happiest child in the world, even though she has a lot of things going on — probably more than we realize. She clung to us right away. Every time she comes to see us, whether it’s at practice or a game, she’ll run right out on the field and give us all hugs.”

For Balint, it was always important that Rylie be kept in the loop as to what was happening with her medically, rather than try to mask it, and said that she knows a lot more about her illness than a 4 year old should. At school, she stays on top of all the medication she needs to take and makes sure that she’s using her own crayon box, to avoid coming in contact with others’ germs, and even a small cold could wipe her out for three weeks straight. Being on the team is Rylie’s incentive to keep herself in tip-top shape, especially since she’s going to be part of the team again next year.

“Sometimes, I sort of use it as a bargaining chip,” Balint said. “If she won’t do something that she has to do, I’ll say to her ‘you think your team would like that?’”

In fact, the team has such an effect on her that she’s even developed a variety of superstitions once it’s game time.

“She has to wear the strings out of her shorts,” Balint said, “and she’s gotta wear her red jersey to school and white jersey to the game. Right before every single game, she runs to the coach with a package of Scooby Doo fruit snacks and he has to eat them. It’s been her little superstitious tradition now.”

John Lutterbie and Naomi Solo with the sign designating Port Jefferson as a ‘green’ village.

By Naomi Solo

The Port Jefferson High School Environmental Club sells reusable water bottles at a previous Go Green event.
The Port Jefferson High School Environmental Club sells reusable water bottles at a previous Go Green event.

A decade ago Ann Kaplan and John Lutterbie from the Stony Brook University Humanities Institute formed a university community group in order to inspire positive thinking about the environment. When the group wanted to choose a target area to begin its work, the Village of Port Jefferson was selected. The Humanities Institute joined forces with the local government and Port Jefferson schools to make the village a model for environmental awareness.

On Saturday, Nov. 5, the community is invited to to learn more about these joint efforts at the 9th Annual Go Green Information Fair. This year the free event will be held in the cafeteria of the Earl L. Vandermeulen High School at 350 Old Post Road in Port Jefferson from noon to 3 p.m. Creative projects initiated by local students will be the highlight of the day along with musical presentations by the elementary school chorus and a special musical performance by high school student Cole Fortier.

Come learn about Port Jefferson High School’s new Green Roof project, located on the roof of the boy’s locker room. A green roof is a roof of a building that is partially or completely covered with vegetation and a growing medium, planted over a waterproofing membrane. Sierra Club members will be on hand with information on where to hike and explore on Long Island, and members from the Long Island Native Plant Initiative will demonstrate the many ways to cultivate a garden using indigenous plants. A fine example of this is the native plant garden Go Green, LINPI and Port Jefferson Village have developed on the green triangle at the intersection of Spring and High Streets.

An environmental-themed student art show, organized by Lynn Edsall, chairperson of the high school art department, will also be on view to add to the richness of the day and don’t forget to stop by the “Green Elephant” table where, for no money, you can be part of yet another recycle team by taking home whatever items you wish. You may also contribute items while cleaning your closets and cabinets. Call Barbara at 631-642-3048. Please no clothes, linen, electronics, or books.

For further information, call 631-473-3549.

The Long Island Museum in Stony Brook hosted its annual Halloween Family Fun Day last Sunday afternoon. The free event attracted many families who enjoyed the day painting and decorating pumpkins, trick-or-treating, games and a 1960s-themed musical performance by Squeaky Clean.

 

The Long Island Museum, 1200 Route 25A, Stony Brook will welcome Suzzy Roche and Lucy Wainwright Roche in concert on Sunday, Nov. 13 at 3 p.m. for an afternoon of songs, great harmonies and stories. The mother/daughter duo bearing the names of two famous musical families is presented as part of the museum’s Sunday Street Concert Series, which is a collaboration with WUSB-FM, The Greater Port Jefferson Arts Council and The Long Island Museum. All concerts take place in the Carriage Museum’s Gillespie Room.

Advance sale tickets are $22 through Nov. 11 at www.sundaystreet.org. Tickets may be purchased at the door for $27 (cash only). For the full Sunday Street schedule visit www.sundaystreet.org or call 631-632-1093.

Staff members from the Sachem Public Library’s Community Services Department pose with Lidia Bastianich after the event: from left, Patrice Prawicka, Debra Vigliotti, Lauren Gilbert, Anne Marie Tognella, Lidia, Lorraine Silvering, Barbara DiPalmo, Karen Brady and Wendy Schlactus. Photo from Annemarie Tognella
The chef speaks to the a large audience at Sachem Public Library on Oct. 30. Photo from Annemarie Tognella
The celebrity chef speaks to the a large audience at Sachem Public Library on Oct. 30. Photo from Anne Marie Tognella
Teen librarian Kyle Quenneville gets his signed copy of Bastianich’s new book. Photo from Annemarie Tognella
Teen librarian Kyle Quenneville gets his signed copy of Bastianich’s new book. Photo from Annemarie Tognella

TUTTI A TAVOLA A MANGIARE!

Approximately 375 fans of celebrity chef, author and restaurateur Lidia Bastianich attended a talk and book signing event at Sachem Public Library in Holbrook last Sunday in honor of Italian Heritage Month. Lidia signed copies of her latest book, “Lidia’s Mastering the Art of Italian Cuisine: Everything You Need to Know to Be a Great Italian Cook,” and posed for pictures with attendees both before and after her talk.

Lidia spoke about growing up in Italy and moving to the United States at the age of 12, how she got started in television with the help of Julia Child, going into business with her children and how important family is to her. She described some of the differences between Italian and Italian-American cuisine, how proud she is to be from “the two best countries in the world” and answered some cooking questions from the audience. The crowd was thrilled to meet her and enjoyed her personal anecdotes.

Residents from all over the North Shore spent the weekend and Monday celebrating Halloween and dressing up in their spookiest costumes.

Visitors express their enthusiasm for Stony Brook. Photo by Donna Newman

Stony Brook was on display as a destination on a global scale this past weekend.

A group of travel product developers — those who design tours for the luxury market in mainland China — visited the Village Oct. 22 as part of a “familiarization (or fam) tour” of Long Island.

“We don’t have time to showcase the entire island, so we choose some places that are special,” Joan LaRosa, director of sales for the Long Island Convention and Visitors Bureau said of the visit. Evidently Stony Brook is one of those.

The tours encourage designers to add Long Island stops to their itineraries. She said five “fam” tours are going on right now, hosted by United Airlines, which provided the plane tickets.

A second entity participating in this travel sales pitch is the New York State Division of Tourism via its I Love NY campaign.

Anna Klapper, a manager for global trade development for Washington, D.C.-based Brand USA, is one of the guides accompanying the group on their journey.

“They flew into New York Oct. 19 and have been visiting places on Long Island,” she said. “Tomorrow morning we’ll ferry to Connecticut and make stops in New Haven, Mystic [Seaport] and Mohegan Sun.”

Visitors enjoy craft beer at Brew Cheese in Stony Brook Village. Photo by Donna Newman
Visitors enjoy craft beer at Brew Cheese in Stony Brook Village. Photo by Donna Newman

Klapper pointed out that she and colleague Philip Joseph have noticed that their guests are constantly online posting everything on social media — adding value to their sales efforts.

Brand USA is an organization that markets the United States as a destination to travel product developers worldwide. Its goal is to increase international tourist visits, thereby fueling the nation’s economy and enhancing its image abroad, as stated on the organization’s website.

The website further states it is “the nation’s first public-private partnership to spearhead a globally coordinated marketing effort to promote the United States as a premier travel destination and communicate U.S. entry policies. Its operations are supported by a combination of contributions from destinations, travel brands, and private-sector organizations, plus matching funds collected by the U.S. government from international visitors who visit the United States under the Visa Waiver Program.”

The visitors from China are also accompanied by Tina Yao, Brand USA’s Shanghai office director.

Gloria Rocchio, president of the Ward Melville Heritage Organization, made the arrangements for the visitors and was on hand to greet them.

“The LI Convention and Visitors Bureau picked Stony Brook for this visit,” she said. When asked if she knew why, she speculated, “perhaps because we have a 21st century, world-class university and a picturesque, historic village on the water?”

Rocchio invited Yu-wan Wang, associate dean of international admissions at Stony Brook University, to meet the group, talk about the university and answer any questions they had about it. She also served as an interpreter, and when she asked William Wang of Shanghai to tell what he liked best about Stony Brook, she translated:

“I love the fresh air and to be so close to the ocean.”

Following a sampling of lavender and espresso cheese and craft beers, the party of 16 made their way across the street to The Jazz Loft for a musical evening.

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St. Charles Hospital nurses and other staff wear pink bracelets as a sign of support for Desiree Bielski-Stoff, who is battling breast cancer. Photo from Bielski-Stoff

By Rebecca Anzel

Registered nurse at St. Charles Hospital in Port Jefferson Desiree Bielski-Stoff knows what a lump feels like — she had a small one removed from her left breast when she was 20. Since then, she performed self-examinations regularly and, coupled with her medical knowledge, thought she was “pretty good” at self-assessment.

In September, Bielski-Stoff, who is now 37, was diagnosed with breast cancer. Less than a month later, she had a double mastectomy at Memorial Sloan Kettering Cancer Center in Manhattan.

Bielski-Stoff waits to enter the operating room before her double mastectomy Oct. 4. Photo from Bielski-Stoff
Bielski-Stoff waits to enter the operating room before her double mastectomy Oct. 4. Photo from Bielski-Stoff

“I was looking for something like that mass in my left breast, something I could feel,” she said. “It wasn’t like a lighted sign going ‘Bling Bling, you have cancer — you have a mass in your breast,’ and I think that’s what we think we’re supposed to be looking for.”

October is national Breast Cancer Awareness Month, and Bielski-Stoff has been sharing her story with friends and family in the hopes they will not have to go through what she experienced. Every two minutes, a woman in the U.S. is diagnosed with breast cancer, a disease that kills more than 40,000 women each year, according to Right at Home, a senior care organization.

On average, women develop breast cancer at age 61. Bielski-Stoff’s diagnosis rattled her family, friends and coworkers. She has worked at the hospital since 2004.

“It’s eye-opening for all of us — I’m her age, you know? You never know,” Kim Audiino, an emergency room nurse at St. Charles Hospital and friend of Bielski-Stoff, said. “I think people need to open their eyes and be more alert about checking themselves.”

Bielski-Stoff was getting dressed after taking a shower in August when out of the corner of her eye, she noticed her right breast collapsed when she lifted her arm. Her first thought, she said, was that it was due to the 10 pounds she recently lost for her sister’s upcoming wedding. Bielski-Stoff conducted a brief self-exam, finding nothing out of the ordinary — nothing was swollen and she did not feel any lumps.

She showed her gynecologist that Wednesday. Bielski-Stoff said the doctor cocked her head, commented that it looked like a dimple and gave her a script for a mammogram and an ultrasound. The doctor told her it was probably nothing but she wanted to be on the safe side.

Her appointment was Sept. 7 at St. Charles with Dr. Jane Marie Testa, a doctor her coworkers recommended after Bielski-Stoff insisted she wanted to see the best. George, her husband, had asked if she wanted him to go with her, but she said no — she did not want to make it a big deal.

“I remember driving there and pulling up in the parking lot and thinking, either this is going to go in a good way or it’s not,” Bielski-Stoff said, “like, this could be the last time I feel normal.”

The tests took a few hours. When they were over, Testa came in and said she wanted to show Bielski-Stoff a few things with the ultrasound. There was a spot on her left breast the doctor wanted to take a sample of, and one on her right. Then Testa hovered over another spot on her right breast and said she was sorry — it was cancer.

There was no question about what it was, Bielski-Stoff said. It was a classic presentation of a cancerous mass. It was irregularly shaped and had vascularity and calcifications. Questions were flying through her mind about whether her life was over, if she would be in pain and if she was going to be okay, she said.

“The feeling that comes over you when somebody says cancer is just, I started crying,” Bielski-Stoff said. “I thought, ‘How do I absorb this right now. It was everything all at once — fear, a lot of fear.”

Her sister’s wedding was that weekend, so she booked the biopsies for the following Wednesday. Then she set about trying to find a surgeon.

Bielski-Stoff’s insurance company told her there was only one in network near her, so she turned to her coworkers at St. Charles for advice. With the help of her supervisor and the head of human resources, Bielski-Stoff learned the doctors at Memorial Sloan Kettering were covered.

The surgeon gave her two options: either Bielski-Stoff could get a lumpectomy with radiation or she could get a mastectomy. She opted for a double mastectomy.

“I have to live with this. This is what I can live with,” she said about her decision. “I’m young, 37. I can’t spend the rest of my life panicking that I’m getting cancer again.”

“The feeling that comes over you when somebody says cancer is just, I started crying. I thought, ‘How do I absorb this right now. It was everything all at once — fear, a lot of fear.”

— Desiree Bielski-Stoff

Her surgery was Oct. 3. Two weeks later, all the drains were out and she was sore but doing well. The support from her friends at St. Charles helped her through the experience, she said. They visited her every day, bringing her flowers and food, watching movies with her, checking her dressings, helping her bathe and delivering her medicine from the pharmacy.

“We were pretty much her nanny 24/7 while her husband was working,” Audiino said. “She was never alone, and she had more care than anyone I’ve seen because she’s so well-known and well-liked. We love her to pieces.”

Audiino and another friend, Colleen Miller, raised just about $600 selling over 150 pink bracelets around the hospital. Her Facebook page is littered with pictures of coworkers wearing their bracelets — some say Faith, others say Hope and Survivor. The funds paid for the hotel room Bielski-Stoff’s husband stayed in the night before her surgery.

St. Charles is letting employees donate their vacation time to Bielski-Stoff. She has exhausted hers between her cancer experience and working on the hospital’s negotiating team.

“All of us at St. Charles wish Desiree the best of health — I am very proud of our staff for supporting Desiree during this difficult time,” Jim O’Connor, executive vice president and chief administrative officer at St. Charles, said in an email. “Their gesture also brings awareness to this important health issue and the need for screening and early detection.”

Others have been doing what they can to show their support as well. A former patient’s family drove to her house from the North Shore to drop off supermarket gift cards, and her sister set up a GoFundMe account.

Bielski-Stoff said this experience has been traumatic because it feels like she does not just have cancer, but all her friends and family do. Her diagnosis has made the people around her aware of the importance of conducting self-examinations and going to a doctor regularly.

“It made me have a different look on life and it definitely opened my eyes to making sure that I take care of myself and my children, and that all of my friends keep up with checking for themselves,” Miller, a nursing assistant at St. Charles, said. “In the meantime, we all have to be ‘Dezzy strong,’ as I call it, and be there for her while she’s recovering.”

Bielski-Stoff found out on Halloween she’ll need four months of chemotherapy. 

“That’s going to change me as well and make the fight a little bit harder,” she said.

Bielski-Stoff’s friend Jimmy Bonacasa is hosting a fundraiser for her at the Harbor Crab in Patchogue Sunday, Nov. 13, from 4 to 8 p.m. There is a suggested donation of $20.

This version was updated Nov. 1 to include Bielski-Stoff’s treatment plan.

The Suffolk County sheriff's department's emergency response team leads the racers out of the gates. Photo by Bill Landon

By Bill Landon

The annual Patriot Run is more than a fundraiser, it’s a Shoreham-Wading River community get together and healer.

On Oct. 30 at Wildwood State Park, over 400 runners gather for the second annual Patriot Run to honor Thomas Cutinella, the Wildcats football player who was fatally injured in a football game in October 2014.

The 2.54-mile run — 54 being Cutinella’s jersey number — is sponsored by the Shoreham-Wading River’s athletic club. Memorial shirts and prizes were awarded to the top finishers, and there was a barbeque following the race.

Runners stop for the National Anthem before competing.
Runners stop for the National Anthem before competing.

“We don’t advertise this, and if we did, we would have a thousand people — [The event and the turnout] is remarkable and we’re happy to be here, it’s a good time,” said Frank Cutinella, Thomas’ father. “People don’t want to forget Tom, and it’s a way to stay positive.”

In a show of solidarity, the Suffolk County sheriff’s emergency response team led the race, carrying the American flag.

“We just wanted to show that the Suffolk County sheriff’s department supports the local community,” said Michael Poetta, one of the nine members to carry the flag. “We wanted to come out and honor Thomas Cutinella’s [memory].”

There were awards given out in four categories — girls and boys under 18 years old, and girls and boys over 18. Runners of all ages enjoyed the unusually pleasant temperature for the race that cost $25 to run in. All proceeds benefited the Thomas Cutinella Memorial Foundation and scholarship fund.

“It’s real nice that the community does this,” said Kevin Cutinella, Thomas’ younger brother. “It was [John] Regazzi’s idea — he put it together and it turned out well, so this is the second year the community comes out [to continue to do] good things for our family.”

Eric Dilisio crossed the finish line first. Photo by Bill Landon
Eric Dilisio crossed the finish line first. Photo by Bill Landon

Regazzi, a local community member, said he organized the event because he just wanted a nice community outing to support a worthy cause and remember Thomas Cutinella’s legacy.

“It’s a wonderful community,” Regazzi said of the area. “I wanted to bring people together to do something positive in honor of Thomas Cutinella. He was a positive person, a leader in the community, and I wanted to keep that spirit alive.”

First across the line was Shoreham resident Eric Dilisio, a sophomore at Shoreham-Wading River. He crossed the finish line in 14 minutes, six seconds, which was well ahead of the second-place finisher. The top finisher for the girls was Emily Cook, and first across the finish line for the adults was Alana Philcox and Jeff Kraebel.

Kraebel, of Rocky Point, said he only heard the race less than a couple hours before the start, and jumped on his motorcycle to cruise over, sign up and run in the race.

“I’m a firm believer in contact sports and letting the kids play, but after the tragedy I loved the community’s [response] — how everyone rallied — it didn’t terminate their season, it drove the kids to play better,” Kraebel said. “It’s the power of positivity, so it was my pleasure to drop $25 to come here and run today.”

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