AJ: Finding Down Syndrome Care, Inclusion and Hope

When Veronica first learned about her son AJ’s Down syndrome (DS) diagnosis during pregnancy, she said she was completely shocked. She already had two neurotypical children and wasn’t expecting this news. But overtime, she began to see the joys and beauty of a DS diagnosis.

“Felling his little kicks in my belly reminded me that he was a blessing that was sent to our family for a purpose,” Veronica says. “And boy did it all come together during my delivery the moment his beautiful almond eyes locked with mine. He was perfect!”

From that moment on, AJ’s journey was defined not by his diagnosis, but by his spirit.

“It was in that moment that I knew AJ had a testimony to share,” Veronica says. “He was brought into this world to give people hope.”

AJ’s team of support for Down syndrome

After Veronica learned of her baby’s diagnosis before birth, doctors referred her to Children’s Hospital Colorado at the Colorado Fetal Care Center and the Anna and John J. Sie Center for Down Syndrome. Ever since, providers across various specialties at Children’s Colorado carefully planned AJ’s medical care.

“Every doctor, nurse, and staff member at these clinics have been so kind and caring toward my son’s care,” Veronica says. “Children’s has been such a fundamental part of our lives. We feel extremely grateful for this hospital.”

One of Veronica’s earliest memories of Children’s Colorado was at the Sie Center during her pregnancy.

“I remember sitting in the waiting room and observing all of the pictures of children with DS on the wall, then promptly being welcomed by the staff with so much compassion,” she says. “For the first time I felt hope, I felt understood, and most of all I felt that my family and I were somehow being welcomed into a community that I had no idea existed, let alone I’d ever be a part of.”

That feeling of community would become even more important as AJ grew.

Understanding a dual diagnosis with autism

AJ’s life has not been without obstacles. At age 4, he began to regress, losing most of his communication skills and becoming more socially withdrawn. After an evaluation at the Sie Center, our experts diagnosed AJ with autism.

“This was a huge pill to swallow, as my son was now dual diagnosed with DS and autism,” Veronica says. “As a family, we made it our mission to educate ourselves on how to help AJ navigate a world that was not designed for him and his challenges.”

At first, AJ couldn’t be in any loud settings or overwhelming environments. He was non-verbal, and he had no idea how to communicate his feelings or navigate such a busy and chaotic world.

Through therapy at the Sie Center, and thanks to his amazing perseverance, AJ has made remarkable progress. He now attends family functions with ease and enjoys playing with his peers.

“He can now advocate for himself when he would like to be excused from an activity and has begun to ask for his noise cancelling headphones on his own,” Veronica says. “This has allowed him to be present in family outings, social settings and to become a more active member of society.”

AJ is also excelling in using his speech device, especially to ask for popcorn, his favorite snack.

While some daily activities take a few more tries, AJ does everything he needs to.

“He’s such a rockstar and never gives up,” Veronica says. “AJ has goals and dreams just like everyone else, and while he may need some more assistance along the way, he finds his own path to get it done.”

AJ’s journey of care inspired Veronica to enroll in nursing school. Once she graduated, she even became a nurse at Children’s Colorado, working to provide care for families like hers. She took a break from her position to focus solely on AJ’s care and being his mom, but she knows that someday, she will return.

An unstoppable joy and a spirit of inclusion

When he’s not in therapy or appointments, AJ lights up when he’s outdoors. Veronica says he’s a “cowboy at heart,” and loves to visit his grandparents’ farm. His favorite part is feeding the horses. “He can spend hours outside and just socialize with those gentle giants,” Veronica says.

He also adores his older brothers.

“From wrestling, to mimicking their every soccer move, to zip-lining through the jungle alongside them, he is unstoppable,” Veronica says.

For AJ’s family, Down syndrome awareness is an opportunity to share his story and celebrate inclusion.

Veronica wants other families facing a Down syndrome diagnosis to know that they are about to start a beautiful ride. A diagnosis may change the course of a life, but not in a negative way. “You may be tested in ways you never imagined,” she says, “but your child will teach you growth and resilience in ways you’ve never dreamed of.”

“I would like others to know that AJ is uniquely perfect,” Veronica says. “He may have a Down syndrome diagnosis, but that does not entirely define him — it is only a part of his beautiful story.”

As exemplified through the Sie Center’s mission, social acceptance is key to everyone’s emotional and physical well-being. Inclusion is an action, and it takes work from communities. It is possible to create a society that is free from harmful stereotypes.

“Inclusion means that our AJ can have the same opportunities as others and be valued for who he is — not just his DS diagnosis,” Veronica says. “And most importantly, inclusion is just letting AJ be AJ!”