Livingston September 2021 by My Life Publications..Maljon LLC

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By Jillian Risberg fter seeing the immeasurable impact COVID has had in every corner, especially disadvantaged communities, some Livingston High School students (11 almost sophomores and an eighth-graderto-be from Heritage Middle School) wanted to do something the best way they knew how, and Teaching4Charity was born. “I am extremely excited for this opportunity to work with my friends and not only teach younger students subjects we are passionate about, but also make a positive impact on the other side of the world,” says Jonathan Hong, one of the founders. The student-created and student-run non-profit pledges to donate all profit to Cambodian and Ugandan charities, where it will be invested in children’s education, teaching parents technical skills and supporting thousands of struggling, poverty-stricken families. These skilled students got right to it this summer, kicking off their online weekly course offerings — teaching young minds in the community a variety of subjects from academics to STEM and the arts. Their related passion and experience enabled the team members to design the curriculum. Hong and Faizan Ghaznavi are teaching public speaking, William

Wang, Daniel Liang and Alex Wu (math), Tyler Ferreira and Sean Qin (computer programming), Naomi Wei, Hannah He and Celina Jia (English) and Grace Wang and Katie Li (digital art). According to Hong, each course is taught in a daily session; typically Monday to Friday for an hour and a half. There’s nothing better than helping someone else. Even before Teaching4Charity, the students were no strangers to giving back. “Many of us have volunteered at local soup kitchens, food banks, retirement homes, YMCA youth activities, senior homes, (children’s) daycare centers and those were all great experiences for us,” says Hong. They remain committed to sharing their knowledge locally and with those struggling worldwide. “I’ve seen and experienced how education shapes a student’s character, building connections with others, among personal interests and within subjects, and creates a sense of personal identity,” Hannah He says. “I’m driven by the transformation education creates in students and committed to helping students experience it too.” To get in on this… Hong says sign up for their sessions and spread the word about the organization. With such selﬂess spirits, the group hopes to expand their operations for

next summer, and has plans for new projects later this year, so stay tuned. “I find this opportunity very rewarding since it gives me the chance to teach others about something I’m passionate about,” Li says, adding that it means a lot to participate in a program that has influence beyond just Livingston. As high schoolers, many of the 12 are still exploring interests and fields they might want to pursue, with Teaching4Charity a fantastic experience to gain insight into the responsibilities that some jobs entail. “For example, Tyler Ferreira, one of our programming instructors is extremely passionate about computers, coding, robotics, artificial intelligence, and he has been doing a wonderful job of managing our website and other technological resources,” Hong says. At the end of the day, it’s a win-win situation knowing they are each making a difference. Wei enjoys interacting with students and the sense of accomplishment that follows a successful class. “The students are all very interesting and teaching them creates a bond between student and teacher,” she says. For more information or to register for a course, visit mwww.teaching4charity.org. See photo on page 5

Page 2 • September 2021 • Caldwell, Livingston, West Orange Life • Like us on facebook www.facebook.com/mypaperonline.com

Lasagna Love Serves the Needy in the Caldwells and Beyond

By Steve Sears or, of course, people with food insecurities and people have iki Sasso, who has lived in the Caldwell and West lost their jobs and don’t know where their next meal is coming Caldwell area for 24 years, is first hand seeing the fruits from. Bottom line was, she just really wanted to help people of Lasagna Love labor. and just started preparing these meals and delivering them.” “People are just so very appreciative of a warm meal,” Once Menn posted it on social media, the idea took off. Peoshe says, “I know there was one woman in Rockaway that ple who wanted to cook and people who needed the meals saw I delivered to who had requested a lasagna, and she was the posts, and viral it went. Lasagna Love is now in 50 states and dealing with the post COVID effects, and she really couldn’t has over 20,000 volunteers who have prepared about 100,000 cook. And when I delivered it, she did come to the door and meals, touched about 428,000 lives, and deliver about 2,500 to she was so happy and so appreciative and she said, ‘I prom3,500 meals per week. ise you, when I feel better, I’m going to pay this forward. I’m Sasso, who got a match (request for a meal) right after she going to do this, too.’ And that’s really what it’s all about.” signed up, explains the process. “What people do is they can Sasso learned of Lasagna Love one day while watching sign up themselves on the website. They can request a meal for The Today Show last September. A stay-at-home mom who themselves, or they can request a meal for somebody else, and loves to bake, she initially started making cookies during the there’s no questions asked.” Special requests such a gluten-free coronavirus pandemic, those delights being delivered to and lactose intolerant meals can be specified via the website. friends who were nurses who would in turn bring them to “And so maybe you’re not making lasagna,” she says, “maybe their hospitals. However, when she saw the broadcast about you’re making meatloaf instead. That’s what we will do - we will Lasagna Love, she said to herself, ‘Oh my gosh, I want to do work with the people that sign up.” She then adds, “As a volunthis.’ She clicked the volunteer button in the beginning of teer, on the portal, you can put in your availability, and you can October and was in. choose how many (meals you want to make).” Rhiannon Menn founded Lasagna Love in April 2020. Sasso, who has set her current Lasagna Love meal output “She was really just kind of looking for a way to spread some per week at a maximum three, estimates that about five peokindness and kind of help people within her community,” ple including herself (she is also aided by her daughter, Kate, says Sasso. “She and her daughter started making some who also cooks and helps with deliveries) in the Caldwells are meals and delivering meals to families in her neighborhood Kiki Sasso with one of her Lasagna Love lasagnas. Photos cour- involved with cooking meals, and as for Sasso, although her that were struggling with the pandemic, and it didn’t neces- tesy of Kiki Sasso delivery radius is 10 miles, she has gone beyond to deliver her sarily have to be people who lost their jobs or had food insecurities. It really truly could have creations. just been the stay-at-home mom who’s now homeschooling three kids and is just completely For more information about requesting a meal or volunteering to cook, visit www.lasaoverwhelmed, or a teacher that’s working from home, somebody that may have been sick, gnalove.org.

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Caldwell Area Families Take Part in The Seeing Eye Program

By Steve Sears aldwell resident, Jackie Sweigart, is a volunteer who does community outreach with The Seeing Eye of Morristown, whose purpose it is to raise guide dogs for the visually impaired. There are 7 area families who take part: the Sweigarts, five families in West Caldwell, and one in neighboring Fairfield. In addition to raising their current puppy, the Sweigarts have raised one Lab, and 7 Shepherds, and Jackie herself when a child raised a golden retriever. And cute though the little dogs are, puppy training is no easy task, and that’s what puppy raising clubs are for. Most counties in New Jersey have one, so if you are interested in raising a pup for a worthwhile cause, you have to find a location in your area. New attendees’ interests are gauged as they learn aspects of how to raise a puppy. There is also an application process, with listed references that are checked. The majority of the puppies are bred at The Seeing Eye, which has its own breeding station in Chester, and the breeds include German Shepherd, Golden Retriever, Labrador Retriever, and then a cross breed with the latter two. When applying, you can choose the breed and gender. “When you bring them into your home, you house train them for house manners,” says Sweigart, “because they’re going to someone who is

blind. They are not allowed on the furniture, and they can’t sleep in the bed with you, but they do need to sleep next to the bed. They are crate trained, and you can then move to a tie down. Our puppy (Brady) is nine months old; she’s just in a bed next to our bed. The blind person, some of them will probably let them on the furniture, but they can make that decision because not everybody wants that. So that’s important for people to know.” The Seeing Eye started out in Nashville, Tennessee in 1929, moved up to New Jersey in 1931, and it was decided in 1942 that it was better for the puppies to be raised in homes than kennels. The organization then partnered with 4H, and that’s how puppy raising started. Originally it was children involved with 4H, but children would then go to school, so the families had to be involved as well. “We’re in the Essex County club - it’s called Eyes of Hope - and we’re no longer affiliated with 4H,” says Sweigart. “At some point, it evolved where adults could also raise (puppies). So, we have adults who have raised on their own, we have families where it started out the children would be the raisers, and then the parents kept raising after the kids got older.” That was the Sweigarts initial scenario. “We started when my son was a junior at Seton Hall Prep, so our first one was his senior service project.”

Photo courtesy of Jackie Sweigart.

The dogs are not neutered or spayed until they go back to The Seeing Eye between 15 and 18 months old. Eyes of Hope normally meets in Roseland, but due to Covid, has instead held meetings at a South Orange parking deck. “We’ve got lots of room,” says Sweigart of the social distancing. “Puppies under six months old are in what we call their own puppy circles, and then six months and older are in their own training circle. We have club leaders, we have what’s called the puppy educator, and then I’m an assistant leader.” And for Sweigart and other puppy raisers, there is a melancholy when puppies must

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return to The Seeing Eye after they raise them. “In normal times, I give tours at The Seeing Eye,” she says. “I’m a tour guide, and I can take my puppy with me, and there have been times when I’ve been up in front of the room, introducing my puppy and say they might be going back within a few weeks, and I’ve just started crying in front of 50 people. It’s very hard to give them back, and there are some people who just can’t really, and they might not continue puppy raising because it is too hard.” For more information about The Seeing Eye, visit www.seeingeye.org.

Like us on facebook www.facebook.com/mypaperonline.com • Caldwell, Livingston, West Orange Life • September 2021 • Page 5

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Newark Academy Seventh Grader Ryan Fish Golfs his Way to World Stage, Learning Important Life Lessons Along the Way

By Jerry Del Priore yan Fish, at just 12 years of age, is already competing as a high-level golfer. Fish, who attends Newark Academy in Livingston, represented the United States in the 2021 Parade of Nations at the U.S. Kids Golf World Championships in Pinehurst, N.C., in July. It was a great experience for Fish, who hit the links against 155 competitors from over 15 countries and finished in the top 100, his mom, Kimberly Gallo, said. But it is more than just representing the Garden State. After witnessing the Walker Cup, a leading amateur male golf event split into two teams: United States versus Great Britain and Ireland, Fish became enthralled with representing his country. ‘Ryan watched the Walker Cup, and it’s more about the U.S. than just New Jersey to him,” Gallo said. “He just loved golfing for the U.S.” Fish and a team of seven children captured the PGA Jr. League title in New Jersey in the summer. They are headed to the Regional Finals in New York early this month. Moreover, Fish owns aspirations to golf on the high school and collegiate levels some day. Gallo said he possesses the skills to do so, but, more importantly, he knows what it will take to accomplish those goals. And he is already working hard and smart

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toward getting there, a work ethic he has learned from his parents, who came from humble beginnings in Newark. “You know, what he really gained (through golf) was to practice a little bit every day to improve,” Gallo, who resides in Bernards Township, said. “He learned that hard work is more important than talent. But he truly has a talent. He has a pure swing.” Though Gallo is Fish’s mom, she is not the only one who thinks he can go far in the game. “Ryan possesses the skills to hit it long off the tee, squeeze an iron to a tucked pin, or hit a delicate bunker shot when needed,” Jeremy Eccles, Head of Junior Development at Fiddler’s Elbow Country Club and Ryan’s coach since he was 7 years old, said. “Ryan’s skills shine brilliantly even in the most tenuous situations and when his teammates are counting on him.” In addition to learning work ethic from his parents, Fish is in the process of earning his second don (degree) black belt in Taekwondo under Master Moon. Taekwondo is something Gallo said her son has been participating in since the second grade, and has required a good deal of time and an unrelenting effort on his part. Plus, Gallo said, he has developed strong morals and understanding through both disciplines, as in the way a young, silent warrior approaches life, so to speak. continued on page 7

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Like us on facebook www.facebook.com/mypaperonline.com • Caldwell, Livingston, West Orange Life • September 2021 • Page 7

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continued from page 6 “With both sports, values and principles matter,” she said. “He has a quiet demeanor, and I love that about him. He’s learning how to help other people. He’s not rubbing bad days in others’ faces; kids he went to camp with or kids on his team.” Fish also impresses Eccles, who is also a PGA pro, with his grit, maturity and adherence to fairness of play. “Every time I’m around Ryan, I witness his supportive and quiet leadership with other junior golfers,” Eccles said. “Though Ryan has always had a golf IQ and talent above many others regardless of age, it is his sportsmanship, tenacity, honesty, and unflagging consistent willingness to help those he plays with that make Ryan a person and golfer worth knowing. I

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couldn’t be prouder of him.” Additionally, Fish pulls fantastic grades, plays the drums, and possesses a science, engineering mindset, according to Gallo, who said that is a track he may want to pursue in college. But make no mistake, whatever he chooses to do in life, Fish’s parents always drive home that one ever-so important concept that will make him a hole-in-one success story. “I told him, ‘if you want to get there (goals), working hard and doing the right thing will give you more choices,’” Gallo explained. “‘Whatever you do in life, you’ll do it through hard work.’” Fish’s next individual tournament is the State Championships in Hawaii in October.

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Page 8 • September 2021 • Caldwell, Livingston, West Orange Life • Like us on facebook www.facebook.com/mypaperonline.com

St. Raphael Parish of Livingston Celebrates its 60th Anniversary

By Steve Sears n July 6, 1961, Archdiocese of Newark Archbishop Thomas A. Boland was escorted by car around Livingston, looking for a location for a new parish. Two farms were for sale, and he selected one on the south side of Route 10. A day later, Mount Pleasant School of West Orange hosted and Rev. Richard Wall celebrated the first ever Mass of St. Raphael Parish. Fond memories for parishioners abound when discussing the genesis and journey of the parish, and Livingston Life has gathered a few. Vincent Vitiello has been a member of the parish since 1964, when he first attended St. Raphael School. He is on the counting ministry for donations and has been an

usher for over 40 years. “I’ve read and I’ve experienced through personal stories by parishioners what transpired from 1961 on,” he says, “and it’s a great story about how people, through dedication and resiliency, started a parish from the ground up, and continued that strength and dedication to today.” Vitiello also recalls vividly the pastoring of Rev. Martin Sherry. “He was very good, very active, not only with the church, but also with the school.” Mary Soriano also joined the parish in 1960s, and has gotten more involved since Rev. Jose Erlito Ebron (better known as Fr. Lito) became pastor in 2016. “I’m a member of the Finance Committee, the Pastoral Council, Loaves and Fishes, and SAC, which is ‘Samaritans Always Care.’”

Rev Jose Erlito Ebron 2016 present. Photos courtesy of St. Raphael Parish

Karen Davis Kundla, a parishioner since 2016, wears many hats. She is President of the Pastoral Council, a trustee, a member of the Finance Council, the lead of the Lector Council and lector ministry, and is also on the Loaves and Fishes team.

“Fr. Lito is a superb leader in that he knows how to get people to do things with great joy,” she states. Fr. Lito became pastor four years ago in July. “St. Raphael’s is a great parish. It is small but it’s a powerhouse!” he says. “The current memories always come to your mind first,” says Soriano. “And I have to say that because I’ve been very active since Fr. Lito has been here. Fr. Lito is a dynamo, as Karen said. But I remember this warmth going in when Fr. Burns was there, too.” Rev. G. Thomas Burns was named Pastor on August 15, 1979. “Those are some of my fond memories, too. He just was all inclusive, and it was like you were going to a family dinner every Sunday. That’s what it almost felt like, because everybody was smiling, everybody was happy,

Parish and school dedication, January 30, 1965 (*Note: This is from an old newspaper article)

everybody was engaged. And over the years, I have to say that this is probably the most generous parish

that I’ve ever experienced.” After Archbishop Boland’s selection of a continued on page 10

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60th Anniversary... United States Power Squadron continued from page 8 and the first Mass, 275 families Offers State Boating Safety Course spot joined St. Raphael Parish, coming from St.

orthern New Jersey Sail & Power Squadron, a unit of the United States Power Squadrons (USPS) and now America’s Boating Club, will offer the New Jersey State Police, Marine Services Bureau approved Boating Safety Course at James Caldwell High School from 6:30 p.m. to 9:00 p.m. beginning Wednesday, September 22, 2021. The course taught by certified instructors licensed by the State of NJ, and which meets all the mandatory requirements necessary for obtaining your New Jersey Boat Safety Certificate, will run every Wednesday evening for six weeks which includes a night for review, and a night for the required state examination. The cost of the course is $90.00. Legislation in the state of New Jersey was passed a number of years ago requiring all boaters, 16 years of age or older, operating a power driven vessel including a personal watercraft (PWC), to complete a boating safety course. The legislation requires a minimum of eight

hours of instruction with at least six hours of in-classroom study, homework, and a proctored examination. Those successfully completing the course will receive a New Jersey Marine State Police certificate that must be in the operator’s possession when on the waters of the state. Failure to exhibit the certificate is presumptive evidence that the person has not completed an approved boating safety course and is subject to a fine. One must be at least 12 years of age to attend the course. Registration is made through the Caldwell/West Caldwell Center for Continuing Education, 265 Westville Avenue, Room 105, West Caldwell, NJ 07006. Register on-line at www.cwcboe. org/continuinged or by mail (print & mail registration form with check). All calls only after 6:00 p.m. Monday through Thursday, 973-228-2092. Questions concerning the USPS course can also be addressed to the Boating Course Chairman, Bob Rosselot at 973-228-5329; email: rosselot17@aol. com.

friends from the ‘old days’ and have made many new ones over the years. This parish Philomena’s in Livingston, St. Joseph’s in has always been special to myself and my West Orange, and Verona’s Our Lady of the family, and continues to be.” There is a comfort to those who are Lake. Rev. Francis Mulquinn was named first pastor of the new parish in October parishioners, or those just visiting the 1961, and groundbreaking for a new 60-year-old church building. Kundla church and school was held in June the explains. “People who have come to the following year. The first mass held at the church have said that when they sit in the new church building – although it was still church, the environment is warm. It’s not a under construction – was Christmas Eve, gothic cathedral, so it isn’t very rigid, or big, 1962, and construction was completed in nor well defined. But they always choose 1963. Both the school and church were the words ‘It’s a warm environment. I feel officially dedicated in January, 1965. St. that I can sit and just enjoy the quiet, or I can sit and pray.’ They also have said they Raphael School closed in 1973. Ralph Bonanno is the current church like the fact that people say hi to them organist, and he and his family have always when they come in.” “Everything in that vestibule is full been active parishioners. He entered first grade at St. Raphael School in the fall of of love and full of energy and full of 1966. “Some of my fondest memories dedication,” adds Vitiello. “And I think involve Fr. Burns. He married my sister, that’s what causes people, aside from baptized her children, laid my mother and the very warm and welcoming nature grandmother to rest, and was a special of our parishioners, to feel so energized part of my family. He sent a beautiful note and so consoled when they come into St. and called me from Florida when dad Raphael’s.” For more information about St. passed away in 2016. But beyond him, it’s the parish community over the decades. Raphael’s Parish, visit www.straphaelnj. Yes, a good portion of the community have org. passed away, but I still have many close

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Celeste Mancinelli Takes the Story of Her 200 Mile Walk to the Stage

By Jillian Risberg eleste Mancinelli is most at home on stage, so it was only natural that she documented the 200mile hike she took through Spain, to the Santiago de Compostela, as the authentic experience it was. She couldn’t wait to share it with others. She was inspired to take on such a challenge at a crossroads in her life, facing retirement as a Speech Language Pathologist. “I loved that career,” says the performer. “But all the while I was aching to get back to my former career as a professional actress/singer in New York City.” Celeste’s NYC theater credits include Nunsense, A Girl’s Guide to Chaos, 1-2-3-4-5, and My Big Fat Gay Italian Wedding/Funeral. She has performed at the Manhattan Theatre Club and the American Place Theater. When COVID brought the theater world to a grinding halt, the veteran performer wasted no time developing and rehearsing her funny and poignant one-woman show, ‘Crying on the Camino.’ The show was conceived and developed with Celeste’s mentor, the legendary director and acting teacher Wynn Handman, at his studio in New York. “I had never seriously considered writing an entire evening of theater myself,” says Mancinelli. “This theater experience is unlike any I’ve had because it combines acting and singing with a true story from my life.” That story details the joys and hardships that Celeste experienced during her walk on the Camino, with two wonderful friends and a 12-pound backpack for company.

According to Mancinelli, many people do the walk for religious reasons, but she didn’t. She wanted the physical and mental task - and she wanted time to reflect. The living conditions were challenging. “I was with two older

women who were like warriors, never choosing the easy way out,” Mancinelli says. “I walked with Dr. Lynn Burnham Liptak (her former boss) and Liptak’s sister Lauri Burnham continued on page 13

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200 Mile Walk to the Stage... continued from page 12 Massey. Both Liptak and Massey had walked the Camino many times in the past. “I made a choice to do something difficult to prepare for the difficult task of returning to theater after many years,” Mancinelli says. “The decision seemed crazy, but here I am telling the true story of what really happenedsome of it funny and some of it not so funny. During COVID she was able to develop her work-inprogress with director Richard Sabellico, performing the full piece at area libraries prior to getting actual bookings. She is presently slated to perform her piece at the Gateway Playhouse in Somers Point, New Jersey, in New York City at Theater 555 on 42nd St., and in North Carolina, at the American Pilgrims Association Convention (in March 2022). She will continue performing the show at local libraries as well. She believes she was summoned to the Camino for a reason… and is now embarking on a new Camino, bringing this true account of her walk to the stage. “The beauty is that it wasn’t with a direct goal in mind; it was to tell my story… but what has happened is that it’s grown from nothing,” Mancinelli says. “This piece is about minimalism and simplicity, self-reflection and honesty. In sharing this piece my goal is to inspire others to take their own journey — to fully live their own Caminos.” According to Mancinelli, there’s a saying on the Camino, “The real Camino begins when the first Camino ends and that’s what it feels like,” she says. “A new path of promoting and performing my own show. “

When asked, “What is next?” her answer was simple “Auditions and doing my work like all my fellow actors. You see I never left acting,” Mancinelli says. “Theater is in my soul. It’s something I was meant to do.” Shows are scheduled for Sept. 19 at the Fair Lawn Library, September 30 at the Gateway Playhouse, and a special one night performance on October 7 at Theater 555 in Manhattan to benefit the American Pilgrims on the Camino, a non profit organization. For more information or to make reservations, email crycamino@gmail.com.

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I Remember Dad: Hold Dearly In Heart, Thy Steadfast Faith

By Richard Mabey Jr. nce in a lifetime, a most monumental moment comes to pass. At the time, the depth of the golden truth does not resonate to the core chambers of the human heart. Rather, it is only after a bit of time passes, that a person is able to really appreciate the shining diamond aspect of a sacred moment in time, never, ever to come back again. Love is the precious key that unlocks the bolted doors of loneliness, prejudice, fear, and hopelessness. It was in January of 2006, that my dad presented a talk to the good people of Edenville Methodist Church, in Edenville, Pennsylvania, one cold wintry Sunday morning. Dad had managed to beat prostate cancer, kidney cancer and skin cancer. Our beloved Pastor had asked my father to present a talk, that fateful Sunday morning, when she was away on vacation to visit her daughter and granddaughter. I had the distinct honor to introduce Dad, that wonderful Sunday morning. There, in this little country chapel, right before my eyes, my beloved father touched the hearts, minds, and inner beings of his fellow church members. When Dad was done with his presentation, that Sunday morning, I don’t think that there was a dry eye in the chapel. My father shared his inner most fears, of all of his anxieties, in his struggles of fighting cancer. And, then as if my dear father knew his fate, his destiny, he shared with the congregation that he was not feeling all that well lately. That the good Lord had come to him in a dream and told him that he needed to prepare for his journey Home to Heaven’s Gate.

My father’s intuition was keener than the team of doctors that he had. For it was shortly thereafter that Dad was diagnosed with pancreatic cancer. Dad had two more surgeries after that fateful diagnosis, but neither one of them was to any avail. I think that I loved my father as well as any son could love his Dad. My father was also my Scoutmaster. He taught me how to survive in the forest. He showed me which plants were edible and which ones were poisonous. I walked hundreds of miles of the Appalachian Trail with Dad. I shared a canoe with Dad on six, week-long canoe trips down the Delaware River. We often walked the towpath of the old Morris Canal together, down into the forest behind the old Mabey Homestead. My father was all so much more than a father to me, in all so many ways, he was my best friend. I often think of that talk that Dad gave to the congregation of the Edenville Methodist Church on that fateful Sunday morning in January of 2006. For Dad went Home to be with the Lord in early May of 2006. I still deeply mourn for him. In his presentation, Dad stressed the need to always keep a strong faith in the good Lord, despite how things were going in our lives. That we need to believe in the infinite goodness of God. That even though we many not understand it at the time, all things are working for the good of the Lord. Sadly, Dad’s talk was not recorded nor videotaped. Something that, to this very day, I deeply regret. Hold dear the sacred love for one another. Keep thy candle of unconditional love burning brightly in your heart.

Dad steadfastly standing at the podium, presenting his heart moving talk, at the Edenville Methodist Church. I am standing in the left-hand side of this photograph, for I had just introduced my beloved father.

Hold dear to the faith of a mustard seed. For truly, when faith and love combine, miracles can occur. Richard Mabey Jr. is a freelance writer. He can be reached at richardmabeyjr@hotmail.com. Please put on the subject line: My Life Publications.

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West Orange Woman Shines Spotlight on Rare Chromosome Disorders

By Jillian Risberg rysta Senek is a fierce advocate for her daughter and never wanes when it comes to making sure the 13-yearold lives her best life. That’s because Josephine Senek was born with two rare conditions, Tetrasomy 8p Mosaicism, a chromosome disorder and Complete Agenesis of the Corpus Callosum. She is one of 27 in the world with Tet 8p and was also diagnosed in 2014 with Autism. According to Krysta, Josephine is really funny and has a great sense of humor. She’s a wonderful musician; loves music, singing and dancing, swimming, watching trapeze artists, gymnastics; Mickey Mouse, Minnie Mouse, Disney (princesses). “She’s smart, catches on pretty quickly. The unfortunate thing is she can forget things with her brain disorder. She can’t pay attention to too many things at one time,” says the sales team leader/ manager/coach. Josephine also loves her service dog and her brother. Krysta knows the 13-yearold is going to really miss him when he

goes off to school in the fall. “I don’t know if we’re going to have any behavioral issues as a result of him not being around,” she says. “You learn to take one moment at a time and not go too far ahead. People have asked us, ‘how long is she gonna live,’ and we don’t know.” With Josephine’s condition, more apparent as she’s gotten older — her mother says you can kind of see something may be wrong. “You could easily look at her and think she’s a brat or spoiled, why is she screaming. That’s the hidden disorder idea and invisible disorders,” says the realtor. “Her disorder is somewhat invisible unless you really look at her and see her eye might be a little off or she might be a little vacant as far as how she’s responding.” Being on this journey has been an incredible education. In talking about Josephine, people think her mother is in the medical profession, even though she’s a creative and not science-oriented at all. “I learned patience. I can’t believe I have as much patience as I do because of

her. You learn not to compare yourself to other people. I’ve learned to have patience with her, patience with other people — strangers who ask rude questions,” Krysta says. “I have patience when she frustrates me because she can’t explain what she needs or wants. I’ve learned I’m stronger than I thought I was. I’ve learned you’re the best advocate for your child; as much as doctors think they know, they really

don’t know because they’re not the expert on your child like you are. I’ve learned not to rely on what the doctor says.” In fact, she says they found numerous rare disorder patients initially diagnosed with autism have underlying conditions never pursued because doctors stop at the autism. “And when they do further research, continued on page 18

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Page 18 • September 2021 • Caldwell, Livingston, West Orange Life • Like us on facebook www.facebook.com/mypaperonline.com

Rare Chromosome Disorders... continued from page 16 they find a chromosome disorder attached to it,” says the realtor. “So a lot of the funding is going to the wrong places. We may find many more cases of Tet 8p than we even know.” Progress can’t happen unless you have advocacy. As much as one would think the medical and school communities want to help, Krysta says they think of it as a business and are not always there. “So we‘ve had to be advocates for her, give her all the therapies and pay extra for things we need,” says the realtor. They weren’t sure if Josephine was going to walk or talk. She’s pretty independent at certain things. She can feed herself and is learning to communicate, but has emotion behind it at times. She’s a good walker, but doesn’t have great balance for running. She loves people — girls diagnosed with autism are rare and those who are especially social even rarer. “She’s found her independence so she’s extremely independent and stubborn, which is a good and a bad thing,” Krysta says. “And she’s started to find herself as a person and how she fits into the world.” Josephine was at a school with a better educational program but it didn’t have the behavioral component, according to the realtor. Her parents moved her to a school with a fantastic behavioral component and a good academic program if she wants it.

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with each other.” She says it gives Josephine the opportunity to see people experiencing the same things. And they are part of a (small) community group for other 8p disorders; as well as a foundation created by a NYC mom whose daughter has Inversion Deletion Duplication of 8p, less rare than Josephine’s but similarities exist between those kids and the 13-year-old. When it comes to research and funding for these disorders, the realtor says there is nothing. “That’s why Project 8p is so amazing because even though all the research is focused on the Inversion Deletion Duplication, my goal is to get more of the Tet 8p kids involved in the study so we can also be included in the research and funding,” says Krysta. She says the problem with rare disorders, nobody wants to do any research to find anything. It’s not worth their time, they don’t have any money. That’s why she continues to advocate for Josephine. And she has company. “We’ve been blessed. Our family has totally rallied around us… gotten involved with some advocacy, shared her story whenever we have something happening. My brother and sister-in-law donated the money to host the website on a regular basis since she was diagnosed. My mom’s in the medical profession so she understands it continued on page 19

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“But she’s never gonna be able to write (or) understand math, other than simple concepts — and that’s okay,” says Krysta. “If she can get around in daily life and pay for groceries by herself with her debit card, we’ve done our job.” Let her be who she is. The pain comes from things like: ‘why can’t she ride bikes like the other kids,’ the realtor says. “She doesn’t like to ride a bike, so why am I going to teach her to ride a bike,” says Krysta. “She loves to swim, so let’s focus on her swimming. She likes soccer, so let’s focus on the special needs soccer program she’s involved in.” There is a push to teach people understanding and patience and she thinks it’s gotten better, but also knows it has a long way to go. “Understand we’re dealing with a three-year-old in a 13-year-old body and there’s a lot that comes with that, that people don’t understand,” the realtor says. When they first got the diagnosis, and not wanting other families to feel lost or alone — they created a website and Facebook page for Josephine. As a result, many people reached out. “I connected people in England, Ireland and the United States, Brazil,” says Krysta. “We’re all in Tetrasomy 8p Warriors (on FB) I created, a private group you have to be invited into and a free space where we can communicate

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Rare Chromosome Disorders...

AREAS OF EXPERTISE: • Residential Listing, Sales and Marketing Specializing in: Essex, Morris, Union, Middlesex and Hudson Counties. • Buyer, Seller, and Rental Specialist • Luxury Homes Specialist • New Construction, Rebuilds, Condos, Town Homes, Multi-Family

continued from page 18

Please feel free to contact me at 201-687-2707 or at Rachna.Maheshwari@cbmoves.com if you are considering buying or selling a home.

fully,” the realtor says. They did lose some friends because they couldn’t go out or had to cancel last minute and those folks didn’t understand. “Or we could go out last minute and they couldn’t and ‘wish you’d told us sooner’ (they’d say). “Well, we don’t know because we don’t know how she’s gonna be,” says Krysta. “We don’t look at it negatively, only it’s a different time in our life and we’ve started to figure out what we need to do and find the people that are more supportive.” As far as research goes, she’d love to see something where families, once they receive the diagnosis get a pamphlet, have a specialist speak to them, so they feel hope and have a community like Project 8p to reach out to. The more we raise awareness about Tet 8p and rare disorders in general, there’s more of a chance of meeting other affected families. Understanding it’s not easy… “Be patient with the parents, families

and kids going through anything like this — and don’t ask them how they are,” the realtor says. “Things like: ‘How ya doing today’ or ‘How’s your daughter’ are loaded questions.” Krysta says they stopped trying to create Josephine’s life for her because it may not be what she wants it to be. They have to let the 13-year-old determine that. “At the same time, we will push her to focus on the things she needs to focus on,” says the realtor. “Like her independence — putting her shoes and pants on by herself, requirements for everyday life.” An inspirational quote Krysta frequently shares says it all, ‘we mourn the loss of the child we thought we were going to have and celebrate the life of the child we have now.’ “Once you can embrace that fully — which takes a lot of years, it makes sense,” she says. “Then you can live your best life and she can live her best life.” Follow @normalforjosephine on Facebook to learn more and watch videos.

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Building Talent: West Orange Teen Gives Back by Starting Handyman Business

By Jillian Risberg t only 16-years-old, Lorenzo Viney became a handyman because he loves to assist people with projects, small or large. “When I first started my business I noticed how helpful I was being to my community, saving them tons of time and effort,” Viney says. “It makes me feel really good about myself and is a big motivator.” The West Orange High School sophomore has been obsessed with building things since age 11. He has always loved LEGO and would challenge himself to create more builds with larger amounts of parts. “I build anything that has instructions, take apart anything and stain furniture and lots of other things,” says Viney, adding that his rates depend on the job but he promises to give great and accurate quotes. After the past year and living this “new normal,” the 16-year-old says online school didn’t feel right but opening his handyman business in December was everything. “Everyone has been super nice to me. They trust me to get all the work done and I really appreciate it,” Viney says. There’s nothing like giving back. “Before COVID I did community service like helping the homeless by preparing food for them and packing Thanksgiving dinners

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to people who couldn’t afford one,” says the high school sophomore, who is starting young. He plans to grow his business, hoping to reach 200 clients before leaving for college. That work ethic and benevolent nature has served him well. “I am a quarter way there with 60 clients so far,” Viney says. And the 16-year-old has his sights set on becoming a civil engineer, while also thinking about woodworking (as a fun hobby) to create anything people want. He definitely has fans. One in particular always recognized his potential and is reveling in all he is, helping serve as his advisor. “That’s my role; to invest in the success of my son,” says L-Mani S. Viney, Dean of Students at Piscataway High School, on being the best model of what a great employee should look like when the time comes that the teen launches the adult version of his business. According to his father, Lorenzo has gone from shoveling snow at 15, to putting shelves together, to sanding and staining decks to learning brick masonry under his grandfather, a master brick mason. “Now he’s elevating his craft doing on the job intense training/apprenticeship in

Philly working on refinishing brick, putting up a wall, mixing concrete and everything in between. He’s up early with grandad and back late; loving every minute of it,” L-Mani S. Viney says. “The hardworking kid? The one who thrives getting his hands dirty? Who’s down for the 24/7? The one that bounces back up when adversity hits? Always shows up no matter what? That kid, that young man — always wins. That’s what I have always wanted to make sure my son became and he continues to exceed every single expectation I have of him,” his father says. “Plus he’s maintained a 3.6 GPA, honors

classes, Marching Band and still being a teenager doing teenage things? Damn right I’m proud.” At the end of the day, this whole endeavor has had a profound impact on the teen. “Being able to challenge myself with new things gives me lots more excitement with what I do,” Lorenzo says. In need of a handyman? Email mrlorenzo@handymanzo.com or call 973960-7871.

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Serving Essex, Morris & Passaic Counties for Over 10 Years! Fully Insured FREE ESTIMATES on Replacement or New Units, and Ductless Mini Splits

$25 OFF

Your First Service Call With this coupon. Expires 10/31/21

EMERGENCY SERVICE CALL 973.670.9375

Contractors Lic. 13VH04064200 Master HVACR Contractor Lic. 19HC00052200

BE PROACTIVE! CALL NOW for your AIR-CONDITIONING CHECK-UP & MAINTENANCE APPOINTMENT!

info@JMCoolingHeating.com • www.jmcoolingheating.com

Like us on facebook www.facebook.com/mypaperonline.com • Caldwell, Livingston, West Orange Life • September 2021 • Page 21

Now Serving GLUTEN FREE PIZZA & PASTA!

Farewell Not, Thy Brothers in Spirit

Since 1993

PIZZA CALL FOR FAST DELIVERY... SATISFACTION GUARANTEED! 73 W. Mt. Pleasant Ave. • LIVINGSTON Corner S. Mitchell Ave. • (Entrance in Rear)

973-740-0066

FAX: 973-740-9148 • OPEN SUNDAYS 11AM www.livingston-pizza.com OPEN SUNDAY 11AM-9PM MON-THURS 11AM-9PM FRI & SAT 11AM-10PM FREE PARKING

Thin Crust Sicilian Pizza Catering Trays Wraps, Dinners, Salads & Calzones! TRY OUR

COUPON LIVINGSTON PIZZA • 973-740-0066

Our Customers!

EXTRA THIN 12” BAR PIE $8

2 LARGE PIZZAS $ 50

COUPON

1 OFF $ 50 1 OFF $ 2 OFF

LIVINGSTON PIZZA • 973-740-0066

$2095 + tax