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down syndrome

Megan Bomgaars. Photo from Facebook

By Leah S. Dunaief

Leah Dunaief

“Born to Sparkle” is a book written, to my surprise, by a young woman with Down syndrome. The rest of the book title is “A Story About Achieving Your Dreams.” A review of the book appears in our Arts and Lifestyles section on page B23 in this issue, and it tells a heartwarming story about the author, Megan Bomgaars, who is 29 and lives in Denver. In the words of our reviewer, Melissa Arnold, the book “teaches kids that all of us are unique and have something special to share with the world, and if you dream big and work hard, you can achieve anything.” 

Why am I surprised? Because my sister, who was two years younger than I, also was born with Down syndrome, and like Megan, on Thanksgiving Day but 50 years earlier in 1942. While she was clever and wonderful in many ways, Maxine could never have written a book, in part because she would never have been imagined to do so. What a difference that half-century makes.

There is a broad spectrum of Down diagnoses, and Maxine was pronounced “profoundly retarded,” which surely limited expectations for her life. While Megan’s motto is, “Don’t Limit Me!”, and she has become a motivational speaker and the owner of a business, the professionals who examined my sister Maxine told my parents to institutionalize her “because she won’t live very long anyway with that condition.” She lived to be 65.

It was my sister’s bad luck to be born five decades earlier, when mental retardation was considered a stigma for a family, and the response to such a birth was to hide the innocent person. Megan Bomgaars, by comparison, shared her life’s story on television with six others in the A&E docuseries “Born This Way.” The show went on to win an Emmy in 2016.

It was my sister’s good luck to have two parents who recognized her as a fully entitled member of our family and tried to give her every advantage that existed then, which were very few. When the principal of the elementary school that I attended refused to accept her into first grade, my mother asked for the “Dick & Jane” series with which first graders were taught to read and patiently worked with my sister at home for many hours a day. Eventually, Maxine could proudly read that primer. She could also do simple arithmetic, adding and subtracting, and she was very verbal. 

In fact, that was the only difficult part of life with Maxine. She talked constantly and in a loud voice, as if she were on one side of a telephone conversation. Only two things could make her quiet down: music and baseball.

Maxine would sit quietly in the back of the room while I took piano lessons from a teacher who came to the apartment. After he left and I got up, she would slide onto the piano stool and play the melodies of the different pieces I had gone over with the teacher. We’re talking here Bach, Czerny and Mendelsohn. She also adored music that she would hear on the radio, especially show tunes that she could sing. And sing she did, in a Jimmy Durante voice. One of her favorites was “Oklahoma!”

Also, she loved to listen to baseball games on the radio and watch them played on our Sunday outings with our dad to Central Park. I don’t know if she followed the intricacies of the game, but she knew when to cheer and probably loved being part of the crowd.

Megan Bomgaars loved going to school and was a cheerleader in high school. My sister also attended a school in Brooklyn that was operated by Catholic Services. A bus would pick her up, along with my mother, each day and drive them to Brooklyn. Incidentally, my mother never let her out of her sight. My parents protected Maxine from a world that could not always be kind and safe. But for Megan, a person who incidentally has Down syndrome, today society learns from her.



Leg. Sarah Anker with Schiavone. Photo by Julianne Mosher

Suffolk County Legislator Sam Gonzalez (D-Brentwood) was joined with local and national officials this week, urging Suffolk County to adopt a bill he spearheaded that would make March 21  Down Syndrome Awareness Day.

Leg. Gonzalez talking with Derek and Hazel. Photo by Julianne Mosher

“The idea behind this was something that has been in the works for some time now,” he said. 

There are three phases to it — county, state and eventually federal. 

“This day is acknowledged around the world and by the United Nations,” Gonzalez said. “I just couldn’t understand why it wasn’t something that was recognized here.”

During the press conference on May 18 outside the county offices in Hauppauge, elected officials from both parties supported their colleague who passionately has moved the bill forward. They proudly stood next to advocates with Down syndrome, like Brittany Schiavone, founder of Brittany’s Baskets of Hope, Daniel Fletcher of the Special Olympics World Games and John Cronin founder of John’s Crazy Socks.

Daniel Fletcher, Brittany Schiavone, Suffolk County Leg. Sam Gonzalez, Janissa Lloyd, John Cronin and Nassau County Leg. Joshua Lafazan

“This resolution declaring March 21, as Down Syndrome Awareness Day is long overdue,” said Legislator William “Doc” Spencer (D-Centerport). “It’s been recognized all over the world to bring attention and to create a voice advocating for the rights, inclusion and the well-being of people with Down syndrome.”

Spencer added that Down syndrome occurs in one in 700 births. There are currently 400,000 people living in the United States with Down syndrome — half of those people with heart defects. 

“Down Syndrome Awareness Day is to encourage more people to learn about this condition, to celebrate those living with it, and to recognize the ways in which medical advancements can boost their quality of life,” he said. 

Legislator Sarah Anker (D-Mount Sinai) felt a personal connection to the bill. She said her cousin grew up with Down syndrome. 

“We have to get the word out,” she said. “We have folks who have Down syndrome that are superstars, that can do amazing, things that can inspire us.”

And by establishing a date that reminds people about this community only betters them in the future. 

“What’s also important about having a day like the Down Syndrome Awareness Day is talking about the needs of our community members going forward,” said Legislator Rob Calarco (D-Patchogue). “Some of these young men and women, as they grow older, they’re going to be looking for housing services, they’re going to be looking for ways to get out on their own and establish their own lives. And we need to make sure that we have those underlying resources available to them. We won’t do that unless we are talking about what those needs are.”

Centereach mom Karyn Degnan. Photo by Julianne Mosher

Centereach resident and mom of two children with Down syndrome Karyn Degnan said this is long-overdue. A board member with Patchogue-based GiGi’s Playhouse, she said she’s been surrounded by a supportive group and a day like this will help even more.

“I am excited for my kids to be recognized and for awareness to be brought to their disability,” she said. “I just couldn’t be happier.”

Legislator Nick Caracappa (R-Selden) knew this was special, too. 

“I don’t see inability,” he said. “When you have the ability to love, when you have the ability to appreciate, make something and give back to your communities. That’s not inability — that’s inspiring.”

Photo by Julianne Mosher

There’s a place for people of all abilities to play soccer, and it’s right in Centereach.

TOPSoccer is a new program within Middle Country Children’s Soccer devoted solely to children with physical, mental or behavioral disabilities.

Rob Draper, a financial advisor at Draper Asset Management in Smithtown and club president of SB Athletico Soccer Club, said he wanted to provide a place where all different types of people can run, play and score goals together without judgment or fear. 

“Soccer helped me experience my kids’ childhoods,” he said. “With soccer, there were times where I would go, ‘Wow. That’s great,’ and our goal is to give those moments to these parents so they can experience it, too.”

Draper teamed up with Dave Phaff, also of SB Athletico, and James Malone, president of Middle Country Children’s Soccer to make this dream a reality.

“We’re all just good-hearted people that just really enjoy working with children and watching them grow into young women and men,” Phaff said. 

Officially kicking off last weekend, the program is made up primarily of skills sessions that help teach the participants the game of soccer, while at the same time providing them with an environment that is fun and pressure-free.

Phaff said the whole process took less than three months to get off the ground, and everyone was immediately on board. 

Joining the team is Tara Phaff, Dave’s wife — who is also a Doctor of Physical Therapy — who helped create the best plans for each individual participant’s needs.   

According to Middle Country TOPSoccer, the team encourages any child or adult who is differently-abled to get involved — and its 100% free.

With no questions asked, Draper wanted to fund the program for the families who decide to join in.

“Rob said to me, ‘I really want to start a special needs soccer program and I’ll fully fund it. I don’t care what it costs, I’ll fund it,’” Phaff added. “He has a great heart.”

While other soccer clubs do encourage inclusivity, Phaff said there aren’t too many locations where kids of different abilities can play further out east. That’s why Centereach was a great, central spot to get the ball rolling.

On Saturday, April 10, the group held its opening day at Oxhead Road Elementary School where 25 individuals, ranging in ages five to 55, headed to the field to kick, run and enjoy the sunshine. 

Some of the participants have Down syndrome, some on the autism spectrum and two children were able to play soccer from their wheelchairs. One thing they all had in common was the giant smiles on their faces.

Each player, Phaff said, gets a buddy that works with them every practice. These buddies are volunteers and soccer players, themselves, who help the individual and stand beside them the whole time — and they are anticipating even more players to come join them this season.

“The whole purpose of this is to give these kids an opportunity to be accepted and feel like they are part of something,” Phaff said. “So, we won’t turn anybody down.”

TOPSoccer has their practices every Saturday at 10 a.m. at Oxhead Elementary School in Centereach. Families who are interested in joining can register online at mccsoccer.org.

Ryan Degnan smiles big while playing at GiGi's. Photo by Julianne Mosher

A group of Long Islanders saw a need for a safe space for people with Down syndrome and, despite COVID-19, they made it happen.

Founded in 2003, GiGi’s Playhouse is an international network of achievement centers, providing free therapeutic and educational programs for people of all ages. This month, the nonprofit’s 52nd location — and Long Island’s first — will open in Patchogue. 

But families from across both North and South shores helped bring this safe space to life. 

Mike Cirigliano, board president. Photo by Julianne Mosher

Mike Cirigliano, board president and owner of Cirigliano Agency, said that GiGi’s Playhouse Long Island will help fill a void for families of loved ones with Down syndrome. Over the course of several years, the group tried to find the perfect site, scouting locations across Long Island. They eventually settled on 100 Austin St. (in Patchogue), where they took over three of the four units inside the building. 

Located right off Sunrise Highway, he said the spot is easy for families to get to whether they come from Nassau County or the Hamptons. 

“There is a true need for this on Long Island,” he said. “This is where people can come — a place where parents who need a place to go with their child can come play, hang out.”

But it’s not just a place to chill. Board member Karyn Degnan said it will offer programs for people with a prenatal diagnosis to those adults with Down syndrome.

“Moms and dads can go to this common place to talk and share their stories,” she said. “They can grow with the center.”

The new facility offers everything from fine motor skills to speech and socialization programs, to tutoring, exercise classes and even a kitchen where young adults can learn how to cook.

The Degnan family. Photo by Julianne Mosher

Degnan, a Centereach mom of three, said two of her children have Down syndrome: Sal, who’s 11 and daughter Ryan, who’s 5.

“As my kids grow, they have a teen center there — a place where people can go as they grow into their young adulthood life,” she said. “It’s a place where they can feel like they belong.”

Cirigliano said that although the fundraising aspect and search for a spot has been years in the making, they officially signed the lease in early February. Over the last month, the group of 50-plus volunteers helped turn the office spaces into a vibrant, exciting place.

“What’s really cool is I brought my kids with me so they can see the before and after,” Degnan added. “After we were done with the construction, I could feel their positive energy and their love for it. When they were able to witness it being all done, there was this happiness that was beaming from them.”

She said her 11-year-old can’t wait to hang out there with his friends. 

Derek DeProspo plays on a toy car inside GiGi’s Playhouse. Photo by Julianne Mosher

One of those friends is Derek DeProspo, an 8-year-old from Selden who also has Down syndrome. His grandmother, Elizabeth Rahne of Selden, is GiGi’s new program director.

“It’s an incredible organization and has incredible mission,” she said. “It’s giving parents and families the support they need to help their children become the best they can be.”

Rahne said groups like the ones at GiGi’s Playhouse are important for new parents.

“It’s an overwhelming diagnosis,” she said. “You don’t know how much they’re going to progress or what they’ll able to accomplish.”

But Derek runs and plays with the kids inside the center — an inclusive space where kids who are neurotypical, on the autism spectrum or who have Down syndrome can play, dance, create and socialize with no judgment or fear. 

“I’m so proud of what he’s able to do now,” she said. “I think people need to hear the story that our children do have some difficulties, but they can accomplish so much more than people think. We need to celebrate their uniqueness.”

Angelique Sternberger, of Port Jefferson Station, lost her 3-year-old son, DJ, eight years ago. 

“When DJ was born, the doctors came to us and told us he had Down syndrome,” she said. “They always focus on the worst things possible, but it’s all about what these children can do.”

She joined GiGi’s Playhouse in 2017 in memory of him and is now the board secretary. 

Port Jefferson Station’s Angelique Sternberger with her late son, DJ. Photo from Angelique Sternberger

“It’s helpful to have a place where you can go if you need some assistance,” she said. “I wish I had a GiGi’s Playhouse when DJ was born.”

This April, DJ would be turning 12 and, looking back, Sternberger thinks he would be thrilled to know what his mom has helped accomplish.“I’m sure he would love it here,” she said. “He was such a social child …  he was the mayor of his school, and he would love being able to interact with other kids.”

Run solely on donations and fundraisers, GiGi’s Playhouse is 99% volunteer based. The only paid employee is the site manager, who opens and closes every day. 

Cirigliano said that people who want to donate can do so online at gigisplayhouse.org. He said that they will be highlighting donors on their front door every month to say “thank you” for making this all possible. 

And the opening comes at a special time for the Down syndrome community: March 21 is World Down Syndrome Day, and the Long Island chapter of GiGi’s Playhouse is officially opening its doors one day before. From 10 a.m. until 10:30 a.m. on March 20, a virtual grand opening will be streamed through Facebook and online.

Everyone is welcome at GiGi’s Playhouse in Patchogue. Photo by Julianne Mosher

Due to COVID-19, families who want to start using the achievement center’s services must schedule an appointment online. 

“Children with Down syndrome like to follow their peers,” Sternberger said. “We want them to be able to socialize. So, come to GiGi’s and we’ll be there with open arms.”

GiGi’s Playhouse will be open Tuesdays through Saturdays. To view the hours of operation, visit gigisplayhouse.org/longisland.

Photo courtesy of Pixabay

By Leah S. Dunaief

Leah Dunaief

Thanksgiving Day would have been my sister’s 78th birthday. But my parents were told at her birth that she would not live long because she had Down syndrome, a genetic disorder. In fact, one of the physicians at the hospital commented, “Best to just throw her in the garbage.” My mother, who was deeply religious, advised the doctor that he was not God, told him in no uncertain terms where he could go, and together with my father, brought my sister Maxine to our loving and supportive home.

That was 1942, when no one ever saw a Down syndrome child, with the characteristic physical markings of a round face, almond-shaped and up-slanting eyes and short stature, on the streets of New York. As a result, she was the object of stares when we were in public. Fortunately, she was a happy and social child, and when she saw people staring, she would wave at them, smile and say, “Hello.” If they stopped, she would continue with, “How are you?” and even, “How old are you?” She would then advise them that they looked much older and thus make them laugh.

Even as late as 1960, the life expectancy of people with Down syndrome was considered to be 10. But by 2007, on average and according to the Centers for Disease Control and Prevention, persons born with Down would live to be about 47 years old. My sister made it to 65.

Why the dramatic difference within one lifetime? The easiest answer is the change in attitudes about children with Down syndrome. When Maxine was born, such children were routinely institutionalized, where they received notoriously poor treatment and lived in horrible conditions. Journalist and lawyer Geraldo Rivera, in 1972, exposed the neglect and abuse in Staten Island’s Willowbrook State School. It broke people’s hearts and was a change agent, and such facilities began to disappear.

Since the 1970s, a Down syndrome child is to be given a free and appropriate education like any other child in the United States by law. When my sister was six, my mother brought her to the neighborhood elementary school to register her for first grade. That was the first of many times she and Maxine were turned away. With great patience, my mother taught Maxine how to read “Dick, Jane and Baby,” to write her name and address between the lines, and to do arithmetic on a second-grade level. Ultimately Maxine attended a Catholic school in Brooklyn for children with special needs. My sister also had a natural gift for music, often spending many minutes playing familiar melodies by ear on the household piano.

I was reminded of all this by December’s Atlantic monthly magazine’s cover story, “The Last Children of Down Syndrome.” The article, by Sarah Zhang, focuses on prenatal genetic testing, the impact it’s having on the number of children born with special needs, and its effects on world-wide population as it becomes easier and more widespread. Her report is centered in Denmark, which in 2004 became one of the first countries to offer free genetic Down syndrome screening to every pregnant woman. She writes that since universal screening was offered, the number of parents who chose to continue a pregnancy after a Down diagnosis, in 2019 for example, was seven. What does the universal introduction of choice indicate about the future of humanity as genetic testing gets more sophisticated? she asks.

What is the value of a human life? The article poses the question, as well as dealing with the terrible pressures of choice. My mother was 36 when she gave birth to my sister. Age 35 and older is considered higher risk for the birthing of a Down syndrome child. There wasn’t the choice of amniocentesis then, certainly not other genetic testing, but had there been, I know how my parents would have reacted. They would have carried on in the same way.

Richard Hoey’s son Kevin lives in a Central Islip residential home, and he said its high time facilities like his son’s receives targeted testing. Photo from Hoey

Port Jefferson resident Richard Hoey’s son Kevin lives in a Central Islip residential home for the developmentally disabled. Kevin is diagnosed as intellectually disabled with Down syndrome, autism, behavioral disorders and is developmentally delayed. His mobility is confined to a wheelchair. Due to the ongoing coronavirus pandemic, 21-year-old Kevin has been largely confined to the facility. Family has only been able to communicate with their son via video chat, in which Hoey said Kevin’s attention span is “minimal.” 

“Kids in residential homes, they are all not able to protect themselves.”

— Richard Hoey

“Look to see him, he doesn’t recognize inside that little square TV screen,” Hoey said.

The issue, the parent said, is simply not knowing. Though he said the facility, Eaton Knolls, one run by United Cerebral Palsy of Long Island, has largely been communicative of current goings-on, two staff and one resident have tested positive for the virus. Though staff has been wearing personal protective equipment, they have been “low on the totem pole” in receiving masks and gloves.

“Kids in residential homes, they are all not able to protect themselves,” Hoey said. “They have no idea the dangers with sneezing, coughing or licking things. And they’ll never have any idea about it.”

The Port Jeff resident and his family have created a Change.org petition saying that Gov. Andrew Cuomo (D) should take similar action to Massachusetts and mandate testing at long-term care facilities, such as residential, veteran and nursing homes, for all staff and residents. 

The petition, change.org/p/andrew-m-cuomo-save-my-son-s-life-new-york-group-homes-need-mandatory-covid-19-testing, has already raised over 1,000 signatures since it started Friday, May 1.

The site is operated through the New York State Office for People with Developmental Disabilities, which sets the rules and regulations for facilities such as UCPLI. 

Camille Schramm, the director of development and public relations for UCPLI, said her company, which was mandated to close every service except for the residential homes since March 17, has struggled to get their hands on the necessary PPE. Through donations and requisitions they’ve managed to procure enough masks and gloves for now, but they have struggled to receive the necessary number of gowns.

Otherwise, facilities like hers “should be in the top 10” of long-term care organizations that need targeted testing. Residents cannot simply go to the local pharmacy to get tested, a plan the governor said is currently in the works. Many have major communication problems and mobility issues. Many are confined to wheelchairs.

UCP would not release the number of people at their 31 facilities who have tested positive for the virus, citing resident and family confidentiality, though she said they have fared better than others in the field.

“We’ve been hit, but not as hard as some of the other agencies on the Island due to the safety protocols and precautions we have in place,” Schramm said. 

Currently, the policy for staff who present symptoms isthat they are sent home for at least two weeks and they require a doctor’s note to be allowed back in. After learning of a positive case, UCPLI brought in a company to clean and sanitize the facility, which Schramm said is “costly, especially considering the number of homes we have.” 

For residents that start to show symptoms, they are self-isolated in their rooms. Though if they start to display problems with breathing, they are sent to hospitals where many remain because many also have compromised immunities. 

“They are part of an underserved demographic population that are very challenged by something like this,” Schramm said.

At the end of March, Massachusetts deployed National Guard technicians to long-term care facilities to attempt to test all workers and residents across the state, though things have only ramped up since then. After an April 27 $130,000 state funding plan, the National Guard has completed more than 28,000 tests at 525 care facilities in Massachusetts, according to The Boston Globe. Though the Bay State is ranked 10th in overall nursing home population, currently New York is ranked at the top with over 101,000 patients.

The OPWDD issued a statement saying testing is being prioritized for people receiving supports from OPWDD or service providers who display symptoms, adding that the state “continues to expand testing opportunities as new tests and locations become available.”

“OPWDD is taking the threat of COVID-19 to the people we support and the broader community very seriously and has activated our emergency response team to closely monitor all reports of possible contact within our system across the state,” the statement read. “All staff are fully trained on infection control practices and OPWDD has released guidance to staff and voluntary provider agencies regarding visitation, PPE use and quarantine protocols at our facilities. OPWDD monitors levels of PPE in all of our community residences, both state and provider operated, and has created a 24-hour emergency services number for providers and staff to contact when issues arise.” 

Residential facilities, mostly nursing homes of adult care facilities, have come under severe scrutiny since it was revealed a huge portion of COVID-19-related deaths have come from these places that house some of the most at-risk populations. As of May 5, New York State reported nearly 20 percent, or 4,813 deaths, in New York have come from these locations. Suffolk County has suffered 593, but many suspect COVID-19 deaths have gone unreported at these locations, and deaths may be even higher.

Hoey said targeted testing is the best way to stymie the growing number of deaths at these facilities.

“That will knock down the death rates,” he said. “The only reason [Cuomo is] not doing it because there’s no pressure for him to do this. “

By Melissa Arnold

Brittany Schiavone has a long list of things she loves to do, including acting, singing, dancing and riding horses. But these days, her biggest passion is giving back to others.

Schiavone, 30, is among more than 400,000 people in the United States living with Down syndrome. According to the Centers for Disease Control and Prevention, Down syndrome is a genetic disorder caused by an extra copy of chromosome 21. Down syndrome can lead to learning, muscular, cardiac and digestive problems, to name a few.

Today, one in every 600 babies in America is born with Down syndrome. Since 2016, Brittany has sent care packages to families around the country that welcome babies with Down syndrome to let them know they’re not alone. Her organization, Brittany’s Baskets of Hope (BBOH), has delivered more than 800 baskets to families in 49 states and Puerto Rico.

Brittany’s mother, Sue Schiavone, remembers struggling firsthand with the reality of Brittany’s diagnosis and uncertain future.

“Everything about my pregnancy and delivery with Brittany was typical,” said Sue, who lives in Huntington and also has an older son. “At the time, screening for Down’s wasn’t as advanced as it is today, so I didn’t have a diagnosis for Brittany prior to her birth. I knew something was wrong right away — she was adorable, but very floppy.”

Sue added that while she worked as a special education teacher, she had limited experience with Down syndrome at the time. “We learned pretty quickly that Brittany had Down’s, and it put us on a totally different road. I want to say we weren’t devastated, but we were. We took some time to come to terms with it, but ultimately we rallied and worked to help Brittany be the best person she could be.”

The Schiavone family became a part of the broad-reaching but tight-knit Down syndrome community, where Brittany was connected to early intervention therapies and other resources. As time went on, she blossomed into an outgoing, bright and happy girl who loved performing. Later on, as part of her own self-directed care program, Brittany went to work part-time at a clothing boutique. She liked the job, she said, but would soon be inspired to try something new.

“I was on a break at my job and I watched a video about people helping babies with Down’s. I wanted to do that,” Brittany said.

At home, Sue said Brittany became insistent about doing something to help families like theirs. “She just wouldn’t let the idea go.”

In 2014, Brittany founded BBOH as a 501(c)3 nonprofit organization. With help from talented family and friends, legal paperwork was filed and social media websites took shape — all with Brittany calling the shots.

Each care package is either personally delivered or mailed by Brittany and contains a hand-crocheted baby blanket, a Down Right Perfect onesie, some pampering products for new parents, Brittany’s story in her own words and educational material about Down syndrome.

 BBOH has exploded in popularity recently, primarily through word of mouth. Thanks to a nomination from family friend and BBOH team member Ashley Asti, Brittany was selected as one of 10 finalists in the L’Oreal Paris Women of Worth national competition. The internationally known makeup company, L’Oreal Paris, began the Women of Worth event to honor those who go above and beyond, selflessly volunteering their time to empower others. 

Asti got to know the Schiavone family when Brittany hired her to work on healthy eating and good nutrition. “Brittany was 25 at the time, and I really admired how driven she was,” Asti said. “How many people at 25 know their purpose and have the courage to live it so fully?” 

She eventually stopped working for Brittany, but the two remained close friends. Earlier this year, Asti saw an ad for Women of Worth while scrolling through her Facebook news feed. “I thought, ‘Wow, this is a big deal,’ and I really felt called to nominate Brittany. When I stopped to consider what a Woman of Worth should be, she immediately came to mind,” she said.

Brittany received a $10,000 prize for being chosen as a finalist and is now enjoying some time in the spotlight.

“I was so excited when I found out,” she said. “There were lots of interviews, and L’Oreal sent a camera crew. I wasn’t nervous about it; I just said, ‘Let’s do it!’ We got our makeup done, it was a lot of fun.”

Now, Brittany is looking for the community’s support to help her win the grand prize of $25,000 by voting for BBOH online now through Nov. 14. The winner will be announced on Dec. 4 at a star-studded gala in New York City.

All of the prize money will be used to benefit BBOH by covering the cost of care package materials and shipping, as well as the creation of a dedicated office space for BBOH in the Schiavone’s home. They are also working toward helping families outside of the U.S. receive baskets, which is in great demand but still too costly for the organization, Sue said.

“Brittany’s Baskets of Hope gives people that have babies with Down syndrome hope and joy, and it makes me really happy to help them,” Brittany said. “I want everyone to know that people with Down syndrome can do anything — really, really anything.”

To vote for Brittany, visit www.lorealparisusa.com/women-of-worth. To learn more about Brittany’s Baskets of Hope, donate to the cause or to request a care package, visit www.brittanysbasketsofhope.org.

Photos by Nilaya Sabnis


Cody Carey, on right, is biking cross-country with fraternity Pi Kappa Phi to spend time with people of all ages dealing with disabilities through dinners, dances, kickball games and more. Photo from Cody Carey

By Kevin Redding

Cody Carey wanted to do something a little more adventurous this summer than work double shifts at a local restaurant. So the Miller Place-bred junior accounting major at Ohio State University decided to strap on a helmet, hop on a blue Giant Defy road bike and push himself further than he ever thought possible.

Joined by 29 other members of the Pi Kappa Phi fraternity from all over the country, Carey, 21, is currently on a 67-day, 4,000-mile bike ride from Seattle, Washington, ending Aug. 12 in Washington, D.C., with scheduled stops along the way to spend time with people of all ages dealing with disabilities through dinners, dances and games.

Cody Carey meets disabled people on his cross-country Journey of Hope. Photo from Cody Carey

The Journey of Hope is an annual fundraising bike excursion hosted by the fraternity’s national philanthropy, The Ability Experience, since 1987 that raises funds and awareness for people with physical and mental disabilities — ranging quadriplegia to Down syndrome to autism.

“It’s incredible to see, especially with everything in the news about students today and this next generation,” The Ability Experience Chief Executive Officer Basil Lyberg said. “It’s very encouraging to understand the power that young people have to impact their communities and that they’re not just talking the talk, they’re out walking it. And in our case, riding across the country.”

Split among three teams of cyclists, each team takes on a different route that ultimately converges in D.C. Individual riders are required to raise $5,500 to contribute to an overall goal of $650,000, and Carey, the only Ohio State student on the ride this year, has already raised $5,799 through an online campaign.

He said members of the fraternity, which spans colleges and universities across the country, are encouraged to participate in the ambitious experience and he knew it was something he would regret not doing.

“I wanted to take myself out of my comfort zone and do something that’s essentially life-changing and that I’ll never forget,” Carey said. “This experience has definitely made helping people even more of a strong value of mine. Everybody should help anybody they can on a daily basis.”

Cody Carey finds some time to sightsee on his trek. Photo from Cody Carey

Since embarking June 6 on the Journey of Hope’s TransAmerica route, Carey and his fellow cyclists have pedaled through seven states, including Idaho, Montana, Wyoming and Colorado, hitting the road each day at 6 a.m. and wrapping up in the early afternoon. The riders generally sleep on gym floors and YMCA’s within the towns they visit, and travel an average of 75 miles per day. During a 12-hour bike rides, the athletes aren’t allowed to listen to music for safety reasons. Carey laughed about the long rides, and admitted there are parts of home he misses.

“How much I miss my bed,” he said. “There’s lot of chatting with the others, lots of silence, and lots of wind.”

He has ridden through sprawling peaks and snow-capped mountains in Montana, crossed over valleys in Jackson Hole, Wyoming, past cornfields in Kansas and said he has loved “taking in the big, beautiful country on two wheels.”

But for Carey, nothing compares to the experience of meeting locals from each state during the ride’s friendship visits. After a morning of pedaling, cyclists visit local groups supporting people with disabilities and take part in a long list of activities, from drawing with kids to playing wheelchair basketball and kickball to having lengthy conversations with teens and adults who face challenges every day.

“It’s been extremely heartwarming,” he said of the visits. “Many of the organizations say it’s like Christmas when we come by. We just make sure the adults and kids are having a great time. You don’t realize everything you have until realizing it can be taken away like with the people we’ve met that have suffered injuries, and with those who are disabled their whole life.”

Referring to the impact it has had on his fellow cyclists, he said, “I’ve never seen a group of guys cry as much as I do now.”

He recalled a special moment in Casper, Wyoming, when a man who recently suffered a brain tumor relayed a resonating message.

Cody Carey meets disabled people on his cross-country Journey of Hope. Photo from Cody Carey

“We were all about to get up and go play some games over in a park when he stood up and sat us all back down to tell us not to stress over the little things in life,” Carey said. “Because, he said, you can wake up one day and have something like what he experienced happen to you and your whole life could change. He told us to enjoy every second we have as we are, which was really touching coming from a guy now considered disabled. It kind of just pointed out all the stupid things we stress about in our regular lives.”

Preparation for the journey consisted of getting on a bike just a week and a half before heading to Seattle, Carey admitted, but being an athlete during his days in Miller Place provided him with much-needed mental stamina. He played soccer, which he competed in at a national level, and lacrosse, too.

“I’m so excited for him, he’s always been in terrific shape and he probably has thighs the size of tree trunks now,”Carey’s mother Elizabeth Hine joked. “I’m proud as heck of him. Between seeing the country and all the people, he says this is the best summer he’s ever had.”

Just two days into the cross-country ride, Carey said the group logged 125 miles over 24 hours while passing through Mount Rainier National Park in Washington state.

“Everyone on that route, except one person who suffered hypothermia, finished, and at the end of it we all looked at each other and said, ‘That’s the hardest thing we’ve ever done in our lives,’” Carey said. “We all say that our bike is our disability and we have to overcome it each day.”

John Cronin smiles with a pair of socks from John’s Crazy Socks. Photo from Mark Cronin

By Victoria Espinoza

For one father-son duo, the secret ingredient to success is socks. John Cronin, a 21-year-old Huntington resident diagnosed with Down syndrome, was trying to figure out what he wanted to do with his life after he graduated from Huntington High School, when John’s Crazy Socks was born.

The two-month-old business venture has already seen success, and Cronin and his dad Mark Cronin are continually coming up with new and unique ideas to set John’s Crazy Socks apart.

“We opened the store Dec. 9 and expected a trickle of sales,” Mark Cronin said in a phone interview. “Instead we were flooded with sales. It turns out John is a social media star.”

The co-founders shot and uploaded a variety of videos to the company’s Facebook page, starring the 21-year-old who has become the face of the business.

John and his father Mark Cronin smile. Photo from Mark Cronin

“Those first couple of videos we put up, which were spur of the moment, had 30,00 views,” the elder business partner said. “People were spreading them all around Huntington. So people flooded us and in fact on our first weekend we ran out of inventory.”

John’s Crazy Socks now ships nationally and internationally, and for local residents shipping may be the most enjoyable part of ordering from the company. Cronin hand-delivers local orders, which his dad said is an extra treat for customers.

“Word spread through social media that John would show up to a house to do a delivery, and whole families would come out to greet him and take photos,” he said.

Cronin said it’s one of his favorite parts of the business.

“I really like going to do home deliveries,” he said in a phone interview.

Aside from a friendly face with a new order of socks, patrons also receive a hand-written thank you note from Cronin as well as some Hershey kisses.

“We’ve learned a lot and saw there is a real opportunity here,” his father said. “We’re spreading happiness through socks, and it’s a way of connecting with people. The more people we can make happy the better off we will be.”

The team also gives customers two coupons with each purchase.

“We want to make it a great experience for people to buy from us,” Cronin’s father said.

John Cronin smiles with a customer during a home delivery. Photo from Mark Cronin

He said the duo has high hopes for John’s Crazy Socks, as they intend to become the world’s largest sock store, offering more sock styles and designs than anyone else. When the company started in December, they offered 31 different styles of socks. Today they offer more than 550 different styles.

It’s not just different colors and concepts customers can find at John’s Crazy Socks. They also sell socks with meaning behind them. Cronin designed an autism awareness and a Down syndrome awareness sock, as well as a breast cancer sock, and a Special Olympics sock. Cronin’s father said a portion of the proceeds from each specialized sock goes to national and local charity groups working towards finding a cure or to advocating for the groups, depending on the cause.

A blue whale sock was created for the Cold Spring Harbor Whaling Museum, and there are many other personalized socks to come.

For Cronin, socks represent self-expression.

“I really like socks,” he said. ‘They’re fun and they can fit your own personality.”

The elder Cronin said he’s enjoyed many aspects of starting the business with his son.

“I love bringing joy to people, the little things we get to do to just wow people,” he said. “We live in this increasingly complex world, and we can connect with people and say we hear you and we can make you happy, and that’s awesome. And it’s great to be able to do something with my son.”

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The news is in my blood. If you don’t believe me, check the name of the person who writes the column on the same page and who started this business 40 years ago — go Mom!

And yet there’s far too much blood in the news these days. It’s not enough that storms and natural disasters kill: People are murdering each other in stomach-churning numbers.

It’s heart-wrenching to read about the losses in our country and around the world. Far too often, headlines about senseless violence fill the news.

News organizations shouldn’t ignore these horrific acts, because we want to know what’s going on in the world, what we need to do to stay safe and what other people are doing and thinking.

It seems to me that there are things we can do. We can give blood. Why? We might save someone’s life, we might give someone a vital supply of something we can’t grow in a field, pull from a river or manufacture in a laboratory.

Recently, I met a woman who had been donating blood to her father for two years. He was sick and he needed blood on a regular basis. After he died, she continued to give blood. She said her father received blood from other people besides her during his illness, and she wanted to give back to a system that improved and extended his life.

Do we read about her? No, generally, we don’t, because it’s a small act of kindness and social awareness that doesn’t get politicians angry and doesn’t cause people to write messages to each other over the Internet. It’s not an opportunity to resort to name calling: It’s just a chance to save lives.

We can also volunteer to make our communities better places. We can be a big brother or big sister, or we can find a charitable organization that provides caring and support for families that have children with special needs. My Aunt Maxine had Down syndrome and gave so much more than she ever took.

Sure, she dominated the airwaves with her husky voice and, yes, she sometimes said and did things that made us roll our eyes, but, more often than not, she displayed the kind of unreserved love and affection that jaded and vulnerable adults find difficult to display. When Maxine laughed or did something extraordinarily funny, like sharing a malapropism, she laughed so hard that she cried. Nowadays, after she died, we find ourselves sharing tears of joy when we think of how much she contributed to our lives and to the room.

When the big things seem to be going in the wrong direction, we the people can commit random acts of kindness. Yes, we can and should pray for each other. It certainly can’t hurt, regardless of whether we’re Christian, Jewish, Muslim or any other religion.

We can also take the kind of actions that define who we are and that show our character. We are living in a world after the Brexit vote and after the failed coup attempt in Turkey. We may not know what to make of all that, but we can decide who we want to be.

We can’t stand on a platform, the way all the former Miss America contestants of bygone days used to, and wish for “world peace,” because that seems naive. And, yet, we can hope that small acts, committed in the name of counterbalancing all the negative news, echoed and amplified across the nation, can turn the tone.

We are fortunate enough to live in a place where we can shape the world in a way we’d like it to be, one community and one random act of kindness at a time.