Beyond a Down syndrome diagnosis

There are about 8.3 billion people on the planet, and not one person is the same. 

Every single human has his or her own talents, fears, voices. Each comes from a different background, upbringing, culture.

And some humans have a full or partial extra copy of chromosome 21 — trisomy 21 — more commonly known as Down syndrome.

According to the Down Syndrome Association of Central Florida, there are about 1,200 Orange County residents living — and thriving — with Down syndrome. 

Many of those individuals call West Orange home. And their families and their communities are better for it.

Winning the lottery 

Winter Garden resident Brian Sanders has triplets. 

He and his wife, Angelina Veronica Sanders, had just bought a two-bedroom house in 2004 and were not expecting to have children just yet. 

However, she got pregnant. Not with one baby, not twins, but triplets. 

During a checkup, they found out baby “C” more than likely had Down syndrome due to a fused tricuspid valve, calcification and a low nasal bridge. 

The doctor immediately told them he could dissolve the baby. 

Whoa! Stop! Sanders said to the doctor. That might be your medical obligation to tell us that, but from this point forward, don’t ever mention that again.

He didn’t think of his child as “something to dissolve.” He couldn’t. 

And although he wasn’t educated on the subject, he immediately got to researching and learning. 

Of course, he had questions. Why? How? 

But he learned quickly: It just simply happens. 

During his research, he found out they did what was right for their family. 

“I learned that we won the lottery,” Sanders said. “It’s probably better than winning the lottery.” 

Calvin Sanders, now 22, is his father’s biggest blessing. 

Calvin Sanders is a jack of all trades. He enjoys coloring, listening to music, watching movies and working out, specifically weightlifting. 

“He’s won gold medals in swimming for the state; he’s won medals in basketball,” Brian Sanders said. He’s got tons of awards when it comes to weightlifting and stuff with Special Olympics. He’s very strong — stronger than his brothers.” 

Calvin Sanders enjoys working out. So much so that he goes to the CrossFit gym almost every single day, five days per week. 

He’s extremely active, and that’s how he likes to live his life. 

He even has gone skydiving — and wants to do it again. 

“There’s nothing that he won’t do; there’s nothing he won’t try,” Brian Sanders said. 

Calvin has taught his family, friends and community members unconditional love, empathy and patience. 

“You could be having the most terrible day in your life, and then (Calvin) shows up, and everything changes,” Brian Sanders said. “You’re happy, you’re joyful again, because he brings that to the environment. … He’s taught us patience, he’s taught us empathy, he’s taught us unconditional love. He’s taught his brothers how to be more acceptable of adults and kids with specials needs. … He’s just a joy.” 

Unfortunately, there are lots of misconceptions out there about individuals with Down syndrome, Brian Sanders said. 

“I don’t like the misconception when you tell someone that your son has Down syndrome, and the first thing they say is, ‘Oh, I’m sorry,’” Brian Sanders said. “You don’t need to be sorry. You need to be happy and jealous that I have someone with Down syndrome. ... The public’s view on family members or anyone with Down syndrome is that it’s a disability, and it’s not a disability at all. Matter of fact, I don’t even like the term Down syndrome; it should be called Up syndrome, because everything about it is uplifting. There’s nothing down about it.”

Calvin Sanders is fearless, accomplished, supportive and happy — everything any parent wants for his or her child.

“The love is unconditional,” Brian Sanders said. “It’s like winning the lottery, and he’s the one that’s got the winning numbers.” 

No limits

When Alec Nachtsheim was born in 1992, his parents Theresa and Doug Nachtsheim had no idea he had Down syndrome. 

“It was an absolute, ‘Wow,’” Theresa Nachtsheim said. “I remember talking to a social worker when he was born, and I said, ‘I don’t know if I can deal with this.’ She said, ‘Don’t make any decisions now. Take the baby home and enjoy the baby.’” 

So that’s what they did. 

“I just remember those words of wisdom, and I went along,” Theresa Nachtsheim said. “I asked questions. I went to support groups and talked to people. Oh my goodness gracious, what a miracle. It’s like the best thing in the world, because it’s so much joy and so much love. It puts you in a whole different perspective of life.” 

Theresa Nachtsheim said she’s learned a lot from her son, Alec Nachtsheim. 

“Don’t sweat the big stuff; just enjoy today,” she said. “We do everything together, and we have fun. We laugh, and we just enjoy life.”

Even though she wasn’t familiar with the condition, people around the world sent her books to teach her and her husband how to take care of their first-born son. 

Soon, they learned Alec Nachtsheim needed occupational, physical and oral therapies, and even educated their insurance company on why he needed all of this.

And he grew up with a relatively regular childhood. 

Aside from doctors’ appointments, he went to public school, took the bus, made friends and tried hard in academics. 

“He had great teachers, and he bonded with his teachers, which is what helped him grow,” Theresa Nachtsheim said. “(When he graduated), he hugged every single person going across that stage to get his diploma. That’s what he does, and cheer people and make people happy.” 

Alec Nachtsheim also is an Eagle Scout, having accomplished that through hard work and dedication. 

His scoutmaster asked Theresa Nachtsheim what he should worry about. 

“‘Honey, he can do anything he wants,’” she told him. “‘Don’t put restrictions on him.’ And they didn’t. He had to earn those medals, and he earned those awards.” 

For his service project, he built a butterfly garden, with the help of former Ocoee Mayor Scott Vandergrift, three commissioners, three past scout leaders and more than 20 community members. 

Alec Nachtsheim is an active member of the community and is recognized around the city often. 

He also is a part of Special Olympics, having participated in swimming, basketball, bowling and, soon, pickleball. 

“He’s got a real mean serve,” Theresa Nachtsheim said. 

Besides sports, he enjoys dot art, marathons and helping others. 

He often helps his neighbors with their lawn and trash. 

Theresa Nachtsheim said she never has put limitations or restrictions on him, allowing him to be the person he wants by doing the things he loves. 

He hangs out with friends on a weekly basis, attends events throughout Ocoee and nearby communities and always has a smile on his face. 

Currently, he works at Publix, where he’s been for 13 years. 

He’s a bagger — and a really good one, Theresa Nachtsheim said. 

He’s friendly with customers and coworkers, and cares about his job. He carefully places items into bags, making sure his job is being done to the best of his ability. 

He also is a part of the Central Florida Community Arts, where he dances, acts and sings with his friends. 

“There are no limitations,” Theresa Nachtsheim said. “I’m absolutely thrilled of all his accomplishments.” She said all people need to do is give individuals with Down syndrome a chance. 

“They can change the world,” she said. “They can make a difference and make you happy. And they’ll tell you what’s important in life.” 

Alec Nachtsheim has an outgoing, fun personality, as well as being a hardworking, caring and supportive man. 

“He deserves a chance,” she said. 

We're all different

Maureen Wright was 28 weeks pregnant when she found out her daughter might have Down syndrome. 

At the time, the chance was 1 in 478. 

And although Maureen Wright was a special education teacher, she knew being a parent to someone with special needs would be different than teaching individuals with special needs. 

When the diagnosis came, it was a shock, she said. 

“My doctor gave me all the bad stuff, so I was very scared,” she said. “I definitely went through a period of grief about it, but I also only had the diagnosis. I didn’t have a baby.” 

But when she gave birth to Andi Wright, her life changed, and her worries went out the window. 

Since she was a child, Andi Wright was trouble — and loved pulling pranks on her unsuspecting family members.

When she was about 5 years old, she had to wear hearing aids. One day, her mother put her in her car seat and quickly noticed her hearing aids were missing. 

Where are your hearing aids? Maureen Wright asked her. 

“She gets out of the car, walked back into the house, went all the way back to our bedroom, went under our dresser and starting taking them out from under it,” she said.

Her mom isn’t her only target. 

“My sister was watching her, and (Andi) asked her to buy Oreos,” Maureen Wright said. “She bought them, and two days later, she’s still at her house and says, ‘Aunt Lola, try these Oreos.’”

Andi Wright had scraped the filling from the Oreo and put toothpaste in it. 

Her favorite prank was putting a beer can in her mom’s lunchbox. 

She enjoys living life through humor. 

“She’s super spunky, super spicy,” Maureen Wright said. “She loves to have a really good time. She loves to have music on loud, singing in the car and dancing.” 

She recently picked up working out and loves the battle ropes. 

“You can’t look at one person with Down syndrome and think that they’re all the same,” Maureen Wright said. “They’re all very, very different. They all have their individual lives — likes, dislikes, feelings (and) emotions.”

Andi Wright is a blessing and a gift to her family, friends and community members. 

“She makes us happy, and she always has us thinking,” Maureen Wright said.  

‘The joy of our family’

Martha Mazo came to Dr. Phillips from Colombia, where she worked as an industrial engineer for the Coffee Growers’ Federation. 

“I was a perfectionist and cared deeply about what people thought of me,” she said.

When she got pregnant and learned her baby girl had Trisomy 21, she was devastated. At the time, she didn’t understand what that meant. 

 “I had spent time with many families who had children with special needs and had seen how difficult it was for them to raise those children in a society that judged them— viewing them as a punishment rather than the blessing I now know them to be,” she said. 

Her husband didn’t care. This baby was his first daughter after having two boys in a previous marriage. 

He was ecstatic. 

“Both my family and my husband’s family supported us from the start,” Mazo said. “To them, it was a blessing. But I couldn’t accept it — especially when I was told she would face serious health issues. … One day, my husband and I asked God for help. We called my doctor and asked her what decision she would make if she were in my shoes. She told us she had faced a similar situation and that God had made the decision for her, because she had studied medicine to give life, not to take it. We cried, we prayed, and I decided to continue with the pregnancy.” 

Sophia Mazo was born at eight months and spent one month in the hospital. She had surgery to repair her duodenum when she was seven days old. 

“She is the person I love most in the world, and every day, I thank God for giving me the opportunity to be her mother,” Martha Mazo said. “When I was younger, my relationship with her was very difficult, but God sent my mom to help me. I was forced to learn how to prioritize what truly matters and how to relax.” 

Martha Mazo credits the many support groups she attended. 

“In those groups, our children always come first, and learning from each of these women’s experiences has helped me become a better mom.” 

Sophia Mazo is a hard worker. 

She spent one year working three hours every Monday with babies who have Down syndrome at the Down Syndrome Association of Central Florida. 

“She is extremely sociable and kind-hearted with everyone,” Martha Mazo said. “She gets along wonderfully with children who have special needs, and regardless of their disabilities, she sees them all as lovely and intelligent. She is very charismatic.”  

Sophia Mazo also works at Special Hearts Farm Mondays through Fridays.  

At the farm, she has learned to make goat milk soap, care for animals, distribute food to those in need and do gardening work, but what she enjoys most is public relations. She participates in most activities and events organized by the Down Syndrome Association, the Down Syndrome Foundation, Nathaniel’s Hope and Family Church. 

“Sophia is the joy of our family,” Martha Mazo said. “She has brought us much closer together. Recently, she faced a health crisis where we thought we might lose her. You cannot imagine the immense pain and terror we felt. My husband and I stayed with her at the hospital 24 hours (per) day. … We cannot imagine life without her.”