When Shari Bottego moved to the Syracuse area more than 20 years ago, she had a 2-month-old son with Down syndrome and very little knowledge about the condition.
“We knew nothing about Syracuse or Down syndrome,” said Bottego, who now lives in Manlius. “When I was finally settled in and ready to meet other families who have a child with Down syndrome I called the woman whose phone number I was given. She was literally packing up her house and moving out of the area. She said she would refer me to someone else in their group, but that never happened.”
The existing group folded, and a year went by. Bottego and her son, David, were out shopping one day when they were approached by a woman who was part of the original group who was eager to start it up again.
“I said I would be interested, but we would do it the proper way and become a 501(c)(3) not-for-profit organization so what happened before would not happen again,” Bottego said. “That was 21 and a half years ago, and I have been the president ever since.”
Bottego and a number of volunteers run the Down Syndrome Association of Central New York (DSA of CNY), which seeks to educate the community about Down syndrome. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. One in every 691 babies in the United States is born with Down syndrome, making it the most common chromosomal condition; more than 400,000 people in the United States have it. People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives. All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
“People with Down syndrome possess a wide degree of abilities and are active participants in the educational, occupational and recreational activities in the community,” Bottego said. “We want those who do not have a person with Down syndrome in their life to see the joy and happiness a person with Down syndrome brings to those around them.”
It takes a village — of volunteers
The board of the DSA of CNY is made up of volunteers who have a loved one with Down syndrome; there is no paid staff. It hosts four or five free social events for families, as well as regular meetings, and publishes a quarterly newsletter with the latest literature, updates on medical advances and research studies and information on local and national conferences and workshops. Membership is $25 a year per family, but it can be waived in cases of financial hardship. A membership directory is also provided to families to encourage friendships and mentorships among families.
But the most important service the organization provides, Bottego said, is to help families of newborns just diagnosed with Down syndrome.
“That first call or email of reaching out for help is extremely difficult. It is so important for them to know that they are not alone and we are here to help them,” she said. “That is why we leave packets of information at the area hospitals. Parents leave the hospital with all the latest information regarding Down syndrome. They also have my contact information so when they are ready to reach out for help they know where to go.”
All in all, the group aims to do what every parent does — to help raise happy, healthy children.
“We want what all parents want. We want our children and adults to have a fulfilling life,” Bottego said. “We want people to see the individual first and then notice that they have Down syndrome. We do not want people have preconceived notions on what a person with Down syndrome is like. We want them to get to know our children and adults and form their own opinions.”
With the help of the DSA of CNY, as well as a number of other support organizations, David Bottego, now 24, has developed into an independent, well-rounded young man.
“He has a self-determination program in which he is decides what he does every day,” his mother said. “Through the agency that helped us set up this plan, we have hired two individuals who take my son to where he needs to be. He volunteers in his community, takes classes, exercises daily, works on life skills and socializes with his friends.”
The Buddy Walk
The DSA of CNY offers a number of activities for families of those with Down syndrome, but its biggest event — and the only one it offers that’s open to the entire community — is the Buddy Walk, which celebrates its 15th year this fall.
“At our Buddy Walk, we do not focus on the therapies, doctor appointments, etc., that is a part of their daily life. We celebrate the joy of having them in our lives and family,” Bottego said. “Most of the committee members have worked on the Buddy Walk from the beginning. We have volunteers who come back year after year because it such an uplifting event.”
The Buddy Walk will take place on Sunday, Sept. 29 at Long Branch Park in Liverpool. Registration starts at 9:30 a.m.; walkers who have pre-registered can pick up their preordered shirts. Walk-in registration is also available. T-shirts are available to purchase. Children’s games are open from 9:30 a.m. to 2 p.m. and only shut down while the walk is in progress. Attendees can purchase raffle tickets The walk starts at 10:30 a.m. The walkers follow the path out of the Longbranch Park area into the Willow Bay section of Onondaga Lake Park.
The Buddy Walk was established by the National Down Syndrome Society in 1995 to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. The event has grown to be the world’s largest and most recognizable Down syndrome awareness program, with more than 250 walks taking place in all 50 states as well as all over the world. Each year 295,000 walkers collectively raise about $11.75 million, which is used to support local programs and services as well as national advocacy initiatives.
Locally, the first Central New York Buddy Walk was held established in 1999. The walk has grown from 520 attendees in 1999 to more than 1,900 attendees in 2012.
“Our walk is unique to all other walks in that it is not a fundraiser,” Bottego said. “There is no entry fee and it is free for anyone who wishes to participate.”
Instead, the walk is funded through the support of area businesses, who provide corporate sponsorships that fund the rental of the park, mailing of materials, free T-shirts to individuals with Down syndrome, food for the walkers and more. Businesses and members also donate items to be raffled off.
“We have received overnight accommodations at area hotels, baskets and gift certificates from area restaurants, free tickets to sporting and entertainment events — the list goes on and on,” Bottego said. “I am overwhelmed at the support we receive from the Central New York community.”
The walk has grown exponentially since its first year.
“In the beginning we had no idea what we were doing. None of the committee members have ever been part of a project this huge before,” Bottego admitted. “By the fifth year of the walk we had more than 1,740 attend the walk. The number has varied very little each year. Last year we had the highest turnout to date of 1,900, and the day was gloomy and drizzly.”
The event now includes children’s games, face painting, sand art, lunch and more. In honor of the 15th anniversary, this year’s walk will also feature some special entertainment.
“We decided to hire the band, Flame, to perform,” Bottego said. “Flame is a group of talented musicians from the Albany area who happen to have disabilities. They average 70 paid performances per year, including concerts in 16 different states and in Europe. Flame’s mission is to bring their music and message to the rest of the world to help change how the public perceives people with disabilities and increase the awareness and acceptance of all people. This is the same message we want to express with the Buddy Walk so it made perfect sense to invite Flame to perform for us.”
Indeed, the message the Buddy Walk hopes to express is one of love and acceptance; that’s the same message, the same mission, the DSA of CNY embraces.
“Our mission is to support one another in the challenges we face, to educate the community both in its knowledge and perception of Down syndrome and to advocate for our children and to be available to other parents,” Bottego said. ‘I hope that in the future I will not hear people refer to a person with Down syndrome that they ‘suffer’ or have an ‘affliction.’ I would like the referral of a person with Down syndrome to be stated as if the speaker said the person has blond hair. It is what it is, without any negative connotations.”
For more information on the Down Syndrome Association of Central New York or register for the Buddy Walk, visit dsaofcny.org, email firstname.lastname@example.org or call 682-4289.
Sarah Hall is the editor of the Eagle Star-Review and the Baldwinsville Messenger. The 2012 winner of the Syracuse Press Club’s Selwyn Kershaw Professional Standards Award, she has been with Eagle Newspapers since 2006. She is a Liverpool native.