To Whom Much is Given

Candace's Down Syndrome Story

Newborn Candace with home health occupational therapist Holly Hutchins

When Candance came into this world, she was blue and lifeless. Twelve years later, she is anything but.

Powell native Candace is like a lot of 12 year old girls. She’s into cheerleading and gymnastics; she loves photography and works on her middle school’s yearbook team. She even has a crush that makes her mom, Shemeka, roll her eyes. Unlike many of her classmates, though, Candace also lives with Down Syndrome.

As the youngest of three siblings, Candace’s diagnosis came as a complete surprise to her parents. When she was born, Candace was already in respiratory distress, so her labor and delivery team sent her to the neonatal intensive care unit at East Tennessee Children’s Hospital. There, she received emergency, life-saving treatment as well as the diagnosis that would shape the rest of her life.

“You prepare so much while you carry your child,” says Shemeka. She reflects on the dreams she had for her two oldest children, and how their successes influenced her plans for Candace. “God’s gifts and blessings often don’t come packaged how we think,” says the former Navy chaplain. “But since He knows me best, His gifts are always intentional.”

Shemeka and husband Bruce’s dreams may have been challenged after receiving Candace’s diagnosis, but together with their care team at Children’s Hospital, they were able to shape those dreams into a fulfilling future for Candace.

“The experts who came alongside us, they really buoyed us up and really supported us,” says Shemeka. She remembers from the first trip to the NICU to see her newborn, the nurses had already contacted the local Down Syndrome support group, so that resources and encouragement were already waiting to welcome the new parents.

Candace, age 2, with physical therapist Ashley Henegar

After being discharged from the NICU, Candace was sent home with an at-home nurse through Children’s Hospital Home Health Services. Down Syndrome can cause developmental delays in speech and motor skills, so occupational therapist Holly worked with Candace to advance those skills in the comfort of Candace’s own home. Candace also attended regular therapy sessions at Children’s Hospital Rehab Center through her infant and toddler years, to prepare her for kindergarten.

“Candace’s family was always so active in our sessions and really wanted to learn what we had to offer, to take home and work on that,” says Ashley Henegar, Director of Rehabilitation Center and Candace’s former physical therapist.

The evidence of that family-centered approach is apparent twelve years later, as Candace shows us around her room in her Powell home. She bounces around the room on bare feet, with a huge grin on her face as she shows off pictures and letters from her friends. The light pink walls are covered with photos and mementos from her years spent doing the things she loves – and all the friends she’s made along the way. Amongst the collection of photos on her desk is one of her and Ashley, snapped at the summer camp Children’s Hospital hosts for its rehab patients. Candace attends every year, and always makes sure to visit with the therapist who was so fundamental to her early years.

Candace’s energy and passion for life is infectious, and she makes friends wherever she goes.

“She just has such a heart for people,” says Shemeka, “and she’s very compassionate.”

After meeting some of the support team who have helped shape Candace’s life, it’s easy to understand where that compassion comes from.

Candace's Story