Dover toddler in spotlight for Times Square Down syndrome campaign

Amy Spampinato plays with her daughter, Lucia, at their Dover home on Wednesday. A photo of Lucia was chosen to be shown in a video at Times Square in New York City before the National Down Syndrome Society’s Buddy Walk on Sept. 17. (Delaware State News/Marc Clery)

Amy Spampinato plays with her daughter, Lucia, at their Dover home on Wednesday. A photo of Lucia was chosen to be shown in a video at Times Square in New York City before the National Down Syndrome Society’s Buddy Walk on Sept. 17. (Delaware State News/Marc Clery)

DOVER –– Down Syndrome Awareness Month might not be until October but the National Down Syndrome Society is kicking off the festivities on Sept. 17 with the National Buddy Walk in New York City.

Before the Buddy Walk –– a one-mile fundraising walk to promote Down syndrome awareness –– begins, a 45-minute video featuring 400 individuals with Down syndrome will play in Times Square.

“The purpose of the video is to show that people with Down syndrome –– kids, adults, anyone, are just the same as everyone else, they do the same things as everyone else,” said Dover resident Amy Spampinato.

Ms. Spampinato is especially excited to see this year’s video because her 21-month-old daughter, Lucia, is featured in the video that will be seen by thousands.

“The National Down Syndrome Society has a Facebook page that we follow and they put out a promo to submit a photo for the video so we submitted a picture online,” Ms. Spampinato said.

Lucia’s photo was chosen from a pool of more than 2,000 submissions.

“We were pretty excited when we got the email because we think she’s adorable and people will get to see her and all these other great kids and adults in the video.”

Ms. Spampinato and her husband, Jesse, learned that Lucia would be born with Down syndrome at her 20-week pregnancy check up.

“The did an anatomy scan and saw some things that weren’t quite as expected so we followed up with a blood test that’s 99.1 percent accurate and it came back positive,” Ms. Spampinato said. “To me, Down syndrome was really not that big of a deal. I’d known kids and families with kids with Down syndrome so I wasn’t worried but the medical complications that can come with it worried me to death.”

Although Down syndrome itself didn’t seem like a big deal to the Spampinatos, other people were constantly giving advice and trying to prepare them for the worst outcomes.

“I got so annoyed when I was pregnant because doctors and other parents would tell us about all the things we DownSyndrome2-MClerywould need to be prepared for and lists of things that she was going to need but we hadn’t even met her yet,” Ms. Spampinato said. “You can’t just generalize Down syndrome because every kid is unique and we just needed to wait to see what she was like and the specific needs that she would have.”

Although there are many Down syndrome-specific needs, Ms. Spampinato’s physicians had alerted her of the possibility of Lucia being born with unrelated hydrocephalus based off her anatomy scan.

Hydrocephalus, formerly known as water on the brain, can result in an unusually large head, seizures, vomiting and sunset eyes in infancy, just to name a few.

“I basically spent the second half of my pregnancy very nervous, very scared of what kind of complications might result from hydrocephalus,” Ms. Spampinato said. “But she was born without hydrocephalus so I look back and wish I hadn’t spent so much time worrying and crying about it.”

Luckily, Lucia was also born without one of the most serious health problems associated with Down syndrome –– congenital heart disease.

“She turned out to be a perfectly healthy baby and we don’t spend a lot of time thinking about Down syndrome and how she’s different,” Ms. Spampinato said. “She’s just Lu.”

Cognitively, Lucia is right where she should be for her age but as expected, she’s lagging behind with her gross motor skills and is still working on walking and using words.

“The one thing that I’ve realized through all this so far is that each kid progresses differently whether they have an extra chromosome or not,” Ms. Spampinato said. “She might be slow to walk now, but so are other girls and boys, so we’ll see how things continue because we just don’t know.”

Lucia gets a check up every six months to see how she is progressing and the Spampinatos are always on the look out for milestones that show her development.

“At first, the check ups and evaluations seemed really annoying because how are you going to judge a baby who is six months?” Ms. Spampinato said. “But then I kind of had a realization about the importance of early intervention because not to compare cancer to Down syndrome, but my mom is a three-time cancer survivor and had pancreatic cancer which most people don’t survive but she did because it was caught so early. So now I realize that by doing the check ups, we are getting to any problems before they do turn into a big deal. We can do all the work now so when she goes to preschool, she’ll be on the same level as all the other kids her age.”

Between check ups, Lucia gets visits from both a physical therapist and an early childhood educator from Parents as Teachers regularly.

The Spampinatos also have a nearly 5-year-old daughter, Vianna, and expect Lucia to live a similar lifestyle as her big sis.

“At this point, we are in the mentality that we’re going to do all the same things with Lu as we did with Vi when she was that age,” Ms. Spampinato said. “Of course, we’ll only stick with the things she likes, but we aren’t putting any kind of limitations on her, because we do believe she’s capable. Vi does gymnastics so once Lu starts walking, we’ll take her and see if she likes it too.”

Ms. Spampinato added that there’s always a concern that Lucia will be accepted by other kids once she reaches school age and participated in inclusion programs.

“Right now, she fits in great at her play groups and in her music class but there is that bit of worry in the back of your mind about how other kids will be when she reaches school age,” she said.

But the Spampinatos hope that by the time Lucia reaches preschool that many of the kids will have met or at least learned about people with Down syndrome and know they’re like anyone else.

Every state has its own Buddy Walk to promote awareness and Delaware’s Buddy Walk is on Oct. 8 on the Rehoboth Beach boardwalk at 9 a.m. The event is free to participate in and like Buddy Walks across the nation, donations can be made to the hosting organization with a portion of all donations going to the National Down Syndrome Society.

The Society’s mission is to serve as an advocate for the value, acceptance and inclusion of people with Down syndrome.

“I’m so glad that Lucia was born in a time when so many people have come before us and have broken down barriers, spread awareness and promoted inclusion –– she’ll be able to go to the same schools as Vianna, she’s going to be able to do anything she wants,” Ms. Spampinato said. “It might take hard work and a little longer to get there but I don’t think there’s anything she’s not going to be able to do or accomplish.”

Visit boardwalkbuddywalk.com for more information or to register for the Rehoboth Beach event.

Reach staff writer Ashton Brown at abrown@newszap.com. Follow @AshtonReports on Twitter.

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