As she tried to teach remotely during the first chaotic months of the COVID-19 pandemic, Mallary, a special education teacher, answered a phone call that would change everything: prenatal testing showed a high possibility that her baby would have Down syndrome: a genetic condition caused by an error in cell division, resulting in three copies of chromosome 21 instead of two. Down syndrome can impact a child’s development, potentially leading to intellectual disability and an increased risk for co-occurring medical issues such as congenital heart defects, hearing and vision problems, hypotonia (low muscle tone), gastrointestinal issues, autism and ADHD.

Mallary vividly remembers the overwhelming amount of support she felt from her special ed colleagues after she shared the news with her community.

“We’re all in,” they said.

And now, years later, they’re cheering on 5-year-old Joey – a one-of-a-kind, thriving kindergartener with an enthusiastic love of Elmo, and a best-in-class care team that helped him get to this point.

Joey has had to be brave from the start. At five years old, he has already endured admissions to the Neonatal and Pediatric Intensive Care Units, heart surgery, cataract surgery, a rare Abernethy malformation, a fragile period on extracorporeal membrane oxygenation (ECMO), and complications with vision and feeding.

He’s been hospitalized many times throughout his life due to unexpected and severe illness, and even faced new, “head-scratching” diagnoses, but Lurie Children’s has been there through it all.

Joey has received multidisciplinary care from specialists across the hospital, including the Down Syndrome Clinic in the Division of Developmental and Behavioral Pediatrics, Surgery, ENT, Ophthalmology, Cardiology, Urology, Orthotics, Complex Care, Critical Care, and more. Mallary says the careful, attentive education from an array of doctors, nurses and social workers who supported her and her husband during Joey’s hospital stays helped them better understand their son’s medical complexities. She’s especially grateful for the level of kindness and communication they’ve offered her in some of Joey’s most challenging moments.

“Having the people who are the best in the nation with your kid…” Mallary says. “I don’t think where we’d be where we are if we didn’t have Lurie Children’s.”

Lurie Children’s Down Syndrome Clinic – led by Dr. Meghan O’Neill, a physician and neurodevelopmental specialist, offers specialized services as well as interdisciplinary and comprehensive evaluations for children with Down syndrome and their families, providing care from birth through late adolescence. The clinic offers evidence-based care recommendations for each unique patient with Down syndrome according to his or her specific needs, focusing on medical comorbidities, cognitive and neurodevelopmental concerns, behavioral and mental health needs, and educational, vocational, and social challenges. Their vision is a world where all individuals with Down syndrome are fully included and integrated into society, provided with the support needed to reach their full potential, and seen as valued members of our communities.

From nurses supporting her through complicated emotions to respiratory therapists explaining each part of the ECMO machine, doctors scouring medical journals searching for answers, and a social worker reminding her to take care of her own mental health as a parent, Mallary has felt supported every step of the way.

Now, Mallary says Joey’s illnesses no longer cause him to get as severely sick as he used to.

Though she has a professional background in special education, Mallary says being Joey’s mom has taught her a lot. Her experience with kids who have Down syndrome was minimal until she had her son, and she wasn’t familiar with the potential medically complex components of his condition.

“I was so oblivious to the medical piece that I felt so unprepared,” Mallary says.

At other times, Mallary feels uniquely prepared to be Joey’s mom. She knows how to navigate Individualized Education Plan (IEP) meetings and understands the importance of early intervention. Still, she says she was grateful to have access to an educational liaison at Lurie Children’s who would listen in on Joey’s meetings ahead of his transition to a new school environment.

“I sit at the table as a teacher, as a mom, as someone who has a learning disability myself – all ends of the table, I’ve sat at – and I think the hardest one has been as a mom.” Mallary says.

But through it all, Mallary has remained a strong fixture of love, support and advocacy in her son’s life.

“Sometimes moms go into this mindset: ‘Why me? Why?’” Mallary says. “And then recently I thought, ‘Thank God it was me,’ because I’m able to advocate for him. I know the law. I know what he is entitled to. He needs me and he picked us for a reason. I think he knew we had this big family, this big support system. I think he knew that his mom would advocate for him for everything he needs.”

And while Mallory advocates for Joey, her community shows up for her. Seeing the way her friends and family always offer a ride, to babysit, or fundraise to support Joey’s medical expenses has been the most special part of Joey’s journey, she says.

“When people offer to sit at a hospital so you can go home, that means a lot,” Mallary says.

Fascinated by water, Joey loves splashing around at the waterpark, the pool, the beach, the bathtub – you name it. And one of Mallary’s next big goals with Joey is to teach him to swim safely.

Joey is also a huge lover of the outdoors and will attend camp for the first time this summer through a special education program in their local park district.

He continues to make progress with his Augmentative and Alternative Communication (AAC) device, making more purposeful button choices as he builds everyday communication with his family.

Mallary says they hope to do more feeding therapy in the future but accepts that a G-tube may continue to be part of their lives. What’s most important, she says, is respecting that everything happens on Joey’s own timeline.

This past September he took his first steps and has been a walking testament to a child’s resilience ever since.

No matter what, Mallary is confident that their loving family and dedicated community will always be there to celebrate Joey’s every milestone.