HEALTH MATTERS: The lucky few

Winter Garden resident Angel Sanders said her son Calvin’s diagnosis of Down syndrome when he was born isn’t something that has ever held him back.

If anything, it has made him stronger.

Angel and her husband, Brian, thought they would never be able to have children together. Then one day, they were given a miracle.

“I was shocked,” Angel said of the moment she learned she was pregnant. “The doctors said there was one, and then there was two, and suddenly, there was three. After that, I just laughed.”

Angel gave birth to triplets March 21, 2004. Although all three babies were healthy, Angel soon learned what the doctors had suspected: One of the babies had Down syndrome.

“It didn’t matter to me if he had Down syndrome or not,” Angel said. “This is what God gave me, so this is what I’m going to do. There’s a reason He gave me this.”

A BABY FIRST

Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent.

Dr. Lynda Pollack, a pediatric geneticist with Orlando Health who also helped to start a special clinic within the Down Syndrome Association of Central Florida, said she was first interested in Down syndrome when she attended medical school at New York University.

“One of the most important things to remember when educating the general public is that children with Down syndrome are babies first,” Pollack said. “I don’t like using Down syndrome as an adjective, because it’s not a ‘Down syndrome child.’ It’s a ‘baby or a child with Down syndrome.’"

Pollack said many mothers worry about what they did wrong when their child has the extra chromosome. However, that usually happens even before conception.

Angel said her doctors suspected Calvin to have Down syndrome even before he was born because of calcifications on his heart and a smaller nasal passage.

According to the Centers for Disease Control and Prevention, about one in every 700 babies in the United States is born with Down syndrome, making it the most common chromosomal condition. About 6,000 babies with Down syndrome are born in the U.S. each year.

Pollack said one thing she likes to do is meet with parents before the baby is born, or right at birth, because it’s important to celebrate the birth. She said it is natural for some parents to feel disappointed, because they were hoping for a healthy baby. However, she treats the birth as a celebration.

“The important thing is to get the parents and the children involved immediately,” Pollack said. “We hook new mothers up with parents who understand what they are going through.”

Because of the risks associated with having triplets, Angel had many tests throughout her pregnancy. Doctors and friends advised her to run an official test to detect the Down syndrome —or to get a selective reduction.

Angel refused.

“That’s not an option,” she told her doctor. “I don’t want you to bring it up again. If they’re not meant to be, then they won’t be, but it’s not my choice. It’s in God’s hands.”

POWER PLAYER

Almost 18 years later, Calvin is thriving.

He attends West Orange High School as a senior with his two identical twin brothers, Ashton and Bryce. He also has an older brother, Devin Rogers.

His favorite subject at school is art, he wants to be a singer, he loves Green Arrow, he wants another tattoo when he turns 18, he is a huge part of the Special Olympics, and he can bring a smile to anyone’s face. His family says he is kind and intelligent beyond his years.

Calvin started with Special Olympics about 10 years ago and participates in track, swimming, football, bowling, power lifting and more. He will even be part of the 2022 Special Olympic Games in basketball.

The Sanders family stays active, and they are members of the CrossFit in Winter Garden off Carter Road. Here, Calvin gets to practice one of his favorite sports —power lifting.

Calvin began power lifting two years ago and now can deadlift 245 pounds, bench press 170 pounds and back squat 235 pounds.

He does all of this while also overcoming Hidradenitis, a condition that occurs when the skin rubs together, causing small and painful lumps to form under the skin. This can be made worse when he sweats during his exercise.

“I get upset when I hear people say, ‘Oh God, I’m so sorry,’ when they find out I have a child with Down syndrome, but over the years I’ve grown to know it’s just their ignorance and that they don’t realize what they’re saying is offensive,” Angel said. “It’s not a curse or something to be sorry about. You should be saying, ‘You’re so lucky’ because there are so many times in Calvin’s lifetime that I just look at him and I feel like to have a child like him, you’ve got to be a great person. I wonder all the time what we did to deserve someone as amazing as him.”

CAUSE FOR CELEBRATION

October is Down Syndrome Awareness Month. The month aims to raise public awareness about the condition and advocate for acceptance and inclusion of people with Down syndrome.

Although people with Down syndrome still face stereotypes and myths, they have shown the condition is only a small part of who they are, and it doesn’t define them or limit their abilities.

Down Syndrome Association of Central Florida Executive Director Heather Barnes said October is the time to educate the community and demystify what it’s like to have a loved one with Down syndrome.

“Our participants with Down syndrome are children, siblings, neighbors, friends or co-workers — first and foremost,” Barnes said. “We use this month to celebrate that individuals with Down syndrome are more alike, than different, to their typical peers.”

Barnes said the association provides families with educational programs, such as PottyTraining Basics, American Sign Language and Special Reads for Special Needs. It specializes in supporting social and emotional health through play groups and social clubs, and also offers support groups for mothers, fathers and siblings.

Winter Garden residents Lila and Kristopher Phanouvong participate in the association’s offerings.

Lila found out Kristopher had Down syndrome before he was born.

“When I found out, I was scared,” Lila said. “We were worried he was going to have a lot of health problems. I remember thinking, ‘Are we going to be able to give him a good life?’”

Eight years later, Kristopher and his mom are closer than ever. Lila began homeschooling Kristopher after the pandemic began. She said although it is difficult, one-on-one education time works better for the way Kristopher learns.

Kristopher is also part of The Lighthouse School in Winter Garden, an enrichment program that offers non-graded, non-credit weekly classes in all subject areas to supplement homeschool education.

Kristopher also attends several therapy programs, including speech and physical therapy.

“He has to work harder than the ‘typical’ kid his age, and he still gets looks from people that can tell he looks different, but he never lets that get him down,” Lila said. “He lights up every room.”

Kristopher loves his family, music, the color pink, games, being silly and the KidStrong program he attends in Windermere.

KidStrong is a child development training center focused on brain, physical and character development. Here, Kristopher gets to run, jump, roll and complete unique obstacle courses.

Angel and Lila both said it is important for their sons to stay active.

LIVING INSPIRATIONS

Angel said she tries to let Calvin be independent and that, in a lot of ways, he is. She said although it is sometimes difficult, anything Calvin’s brothers want to do, she can’t tell Calvin not to do, and she must at least let him try.

Calvin taught her this lesson when he was little.

Angel said when the boys were younger, they had bunk beds and they were worried about Calvin being on the top bunk in case he fell when he was climbing the ladder. She said she and Brian told him no. But he taught himself and proved he could do things just like his brothers.

“I push him to do whatever he wants to do and whatever he’s capable of doing,” Angel said.

At school, Calvin participates in a work program through which he leaves for a few hours a day to go to different sites such as Party City, Macaroni Grill or Bealls.

Pollack said some children who have Down syndrome do well immediately, while others take longer to adjust. She said the difference in development now, as opposed to 20 or 30 years ago, is they push the children to be the best they can be.

“These strong individuals are now graduating college and fulfilling their dreams,” Pollack said. “It used to be, ‘Will they be able to go to school?’ and, ‘Will they even be able to complete grade school?’”

Angel said her son’s heart continues to inspire her.

“With any child, you have your challenges, but as far as Calvin goes, the benefits of having him outweigh the challenges by a million,” Angel said.

Just as Calvin inspires him family, Kristopher inspires his

.Kristopher’s older sister, Kristin, who was the valedictorian of West Orange High School in 2017, started the Buddy Walk in 2016 where the National Honor Society for the school walks for Down syndrome.

Calvin wears his challenges proudly on his wrists, with two dark tattoos that decorate his skin.

On his right wrist, he has ‘The Lucky Few” symbol, a phrase taken from Heather Avis’ book, “The Lucky Few: Finding God’s Best in the Most Unlikely Places.” It has quickly become the descriptor of choice for many who have a family member with Down syndrome.

On his left wrist, Calvin has the “He is Greater Than I” symbol. The tattoo is based off the Bible verse John 3:30, “He (Jesus) must increase, but I must decrease.”

“For Calvin, it has never been about, ‘Can I do it?’” Brian said. “I see his willpower and determination, and it inspires me to be better. I think it can inspire us all to be better.”