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Brittany’s Baskets of Hope

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.”

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