Amber Rose: Defying the Odds with Down Syndrome

During pregnancy, Amber Rose’s mother Jayne stopped feeling movement — doctors told her to prepare for the worst and even suggested contacting a mortuary. Born via C-section and diagnosed with Down syndrome, Amber surprised everyone with her strength and resilience.

Soon after birth, Amber Rose and her family were referred to the Special Care Clinic at Children’s Hospital Colorado, where they found a care team that helps Amber Rose thrive.

Hope and healing at Children’s Colorado

One of the first things Amber Rose’s family learned was that the road ahead wouldn’t be easy. At just five pounds, she underwent open heart surgery to repair some, though not all, of her cardiac problems. In her first two years of life, she spent more time at Children’s Colorado than she did at her own home.

Jayne, who is a licensed practical nurse, was able to put her nursing skills to work at home and combine that with her passion for motherhood to support her daughter through it all.

“She never presents the way anybody thinks she would present,” Jayne says. “She just does things her own way. She always has.”

Amber Rose’s medical needs meant she needed to see many doctors across specialties. Francis Hickey, MD, one of her first doctors in the Anna and John J. Sie Center for Down Syndrome, supported the family not only as a physician but also as a fellow parent of a child with Down syndrome. Although Dr. Hickey has since retired, Jayne still remembers his support.

“Being able to go to a place that I felt safe in and talking to somebody who had a similar experience ... I just didn’t feel alone, and I knew it was going to be OK,” Jayne says.

The Sie Center became another lifeline, providing compassionate care and giving Jayne resources, education and encouragement. Our care team also helped Amber Rose’s complex care feel less complicated.

“I walked in there feeling absolutely overwhelmed and walked out feeling like ‘OK, this is manageable, just one day at a time,’” she recalls.

Cardiologist Jeffrey Darst, MD, has also played an important part in the family’s journey. He has spent more than a decade caring for Amber Rose and is proud of the progress she’s made.

“I’ve known Amber since we performed her first heart procedure at 6 months of age,” he says. “I can’t believe she’s already 13, and she has done so well — I could not have predicted how much she has overcome.”

Finding joy through sports and community

Despite her medical challenges, Amber Rose’s resilience shines especially brightly when she’s active. She first got involved with Special Olympics in second grade. Since then, she’s participated in flag football, basketball, bowling, softball, soccer and field day events.

When Amber Rose first started playing flag football, she didn’t understand the rules and got frustrated when someone pulled her flag. Still, her determination and competitive spirit carried her forward. Now, she loves keeping her flags for as long as she can — even if that means not getting a touchdown. “It’s like a big game of tag to her,” Jayne says.

Jayne especially noticed Amber “taking off” in Special Olympics once she returned to school after the COVID-19 pandemic. She now loves the opportunity to play and be around other people more than ever.

Special Olympics has given Amber more than athletic opportunities. It has also helped her learn to share, take turns and celebrate others. She has made some close friendships and shines as a social butterfly. At her school, Amber’s classmates embrace inclusion wholeheartedly.

 “Amber gets the same opportunities as everyone else,” Jayne says. “It’s great to see kids wanting to be friends with her — you’d think she’s the most popular girl in school!”

A lesson in joy and inclusion

Amber Rose’s personality radiates love and joy. Her cousins describe her as happy, strong-minded, loving, inclusive, empathetic and affectionate. She loves her “Box of Wonders”, music, her mom, siblings and cousins — and she always finds a way to spread joy.

“She’s taught me more about life than I’ll ever be able to teach her,” Jayne says.

She wants others to know that children with Down syndrome are not defined by the limitations or obstacles they face. They are strong, loving and unique individuals with gifts and perspectives to share with the world. For Amber and Jayne, the message is simple: Embrace life fully and unapologetically.

 “There’s nothing wrong with wearing your heart on your sleeve,” Jayne says.