Down Right Perfect

An Alice family pursues a normal life while embracing a son with special needs.

By: Stephanie Kusy
Photos by: Paul Marshall

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Diego Zambrano is a wonder to look at with his thoughtful, dark-brown eyes and matching thick head of hair. He’s a sweet baby boy – just ask his mother and father, Juan and Carla Medina-Zambrano, who celebrate their little miracle every day.

Born Oct. 8, 2014, Diego is a splitting image of his father in all aspects except one. Diego has an extra chromosome – Trisomy 21, most commonly known as Down syndrome. Carla and Juan say they were content with the size of their family – Elizabeth, 20, Mariel, 14, and Jon, 9. However, in 2014, Carla surprisingly found out she was expecting which she now calls a blessing in disguise. She went through routine testing for abnormalities.

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As she was 38, doctors said she faced a high-risk pregnancy. She dealt with similar issues with her daughter, Mariel, and knew conceiving again would be difficult. However, doctors never questioned her baby’s health.

It wasn’t until she gave birth that doctors expressed concern. Diego, weighing at 6 pounds, 1 ounce, had three holes in his heart. These congenital heart defects are familiar traits for children with Down syndrome, the most common chromosomal disorder in America.

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Carla, who has a medical background, never once questioned the future her family would now face. “There was no hesitation,” she says. “There was an instant acceptance. I never once questioned God about it. I knew he had prepared me for it.”

By “prepared,” she’s referring to her son, Jon, who initially opened their eyes to what it is like to care for a special needs child. She cared for him while he battled a bone marrow autoimmune disorder. Thankfully, he’s been in remission the past six years. However, at 3, he was also diagnosed with autism. Carla believes caring for Jon helped her and her husband, Juan, prepare for their journey with Diego, who tested positive for Down syndrome.

At just 5 weeks old, Diego underwent surgery at Driscoll Children’s Hospital to close one of the holes in his heart, a medical condition known as Patent ductus arteriosus, or PDA. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. Doctors said he would stay in ICU for a few days before moving to a regular room. Diego, though, proved them wrong, coming out of the surgery stronger than expected. “Twenty-four hours later, he was ready to go home. He did so well,” his mom adds.

These days, the Zambranos live their own kind of normal at their home in Alice. Mariel plays sports and is a junior honor society member. Jon loves playing videogames. Diego just said his first words, “da-da.”

“He baby talks like there’s no tomorrow,” Carla proclaims. She says he loves to play patty cake and enjoys listening to music, especially when she sings, “You are My Sunshine,” to him. “To this day, I don’t what I did to deserve such an awesome gift from God,” she says. “Diego has touched so many lives. He has no idea how many lives he’s touched. It is such an honor to be a mommy to him.”

Diego faces a long road ahead of him, though. Marking milestones like walking and speech may be delayed. He receives some form of physical and occupational therapy to help with low muscle tone. A deep crease across the center of his palm and extra space between his big toe and second toe all serve as physical reminders of his genetic disorder. And Diego recently became a proud owner of stylish eyeglasses to help him with his vision.

Even though he deals with these daily struggles, his family wants him to live a life that’s as close to normal as possible. This means he will one day attend public school just like his brother and sister. Carla wants Diego to try new things like his peers as he gets older. While she admits she will be an especially protective mother, the sky’s the limit for her son. “I don’t want to have unrealistic expectations,” she says, “but I do want to have goals for him.”

Nowadays, children with special needs are more exposed to other students and mainstreamed in the classroom. She says her daughter occasionally deals with negative comments made by classmates directed toward her younger brother. Carla believes parents should educate their children about kids with disabilities.

“It’s not easy for some of these children to live everyday life like their peers. Their challenges may stem from behaviors, disabilities or the way they look, so I think that it’s really important to share that with your children. They both breathe like you and I do. They have a heart that beats just like yours and mine. And they still have feelings like you and I do,” she says, tearing up. “They may not be able to understand everything that’s going on, but they are human just like you and I.”

Faith plays a strong role in the family’s journey. “I couldn’t get through it without God,” Carla says. “He gives me the strength every day and the peace that I need and the faith that I need to carry on. I can honestly tell you that if God wasn’t in my life, it wouldn’t be easy for me.”

The couple hopes to share their story and reach out to other families with special needs children and let them know they are not alone. Carla created a Facebook page, “Diego’s Journey,” after receiving an outpouring of love and support from the community. She updates family, friends and supporters on Diego’s life, often showing off photos of his happy smile while dressed in a cute T-shirt. #eldiegoisfamous has become a popular hashtag for him – and it’s true. He’s garnered more than 1,200 fans on his page. The couple hopes the page will help spread awareness about Down syndrome as supporters watch Diego grow through photos and videos.

Pure love is how Carla would describe her unique connection with her son. “And I don’t mean just loving him as my child. His personality, his eyes, his expressions – it’s all love.” And that love will continue on through Diego’s journey.

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