Anastasia’s Story: Exceeding Expectations After a Rare Diagnosis In 2016, Candice and her husband, received a call that twin sisters — Anastasia and Athena — had been born in Pensacola, Fla., and were available for adoption. They were on the next flight. When they arrived, they learned that Anastasia was born with Chromosome 9, Trisomy 9p, a rare chromosomal disorder that triples the ninth chromosome. The disorder causes severe developmental impairment. The social workers and doctors recommended that they adopt only Athena, as Anastasia would have a very difficult and uncertain path ahead. They were told that she would never walk, sit up on her own or hold up her head. Despite this news, they decided to move forward with the adoption and find the best ways to help Anastasia reach her full potential.
Their search led them directly to Shirley Ryan AbilityLab, not only
“We’d heard that this unique research hospital never shied away from rare and complex challenges,” said Candice. “When we arrived, the first thing we noticed was an inherent confidence and hope. It was just assumed that they would be able to help Anastasia exceed everyone’s expectations.”
because it was long-known as the best, but also because its goal aligned with their own — focusing on what Anastasia could do, not what she couldn’t. Anastasia’s treatment program was a full-court press. She spent four days a week in a full range of therapies — from occupational, physical, speech-
OTHER PLACES TO EXPLORE HUB The HUB is an inviting family room for inpatients and families to eat, play games or participate in group activities and social events. With a HUB on every inpatient floor, it can be transformed into a creative studio for art, crafts, music or a group movie night. The space is equipped with dining tables and chairs, reading nests, couches, TV, Wii and WiFi. Each HUB also includes a laundry room to allow patients and families to do their laundry throughout their stay. Vistas Vistas are peaceful nooks near patient rooms for family members to step out for a few minutes. There are 19 vistas total throughout the building at the corners of each Innovation Center. Gardens Designed expressly for patients, our gardens are all about movement and progress. The gardens extend a safe invitation to take a stroll outside the hospital on foot, wheels or bionic limbs. They provide our patients and their families a place of calm to enjoy company or reflect on the road to recovery.
language and aquatic therapy to learning all the abilities involved in eating, such as swallowing.
At the outset, she could not lift her head or roll over, but after six months of hard work, Anastasia could sit up and play with her favorite bell toy. “When she sat up for the first time, we cried,” said Candice. Today, Anastasia is using a GAIT Trainer and taking her first steps. A busy four-year-old, she is now being fitted for a wheelchair and orthotics to help her get around. She’s been able to reach a level of mobility that even the doctors never thought possible. Anastasia loves working (and playing) with her therapists Lauren and Krista, who are gifted at making therapy feel like fun. They always put a smile on her face. They know her favorite songs and toys and joyfully find new ways to help her advance. “Shirley Ryan AbilityLab has given our Anastasia the chance to be happy and enjoy life as much as she can,” said Candice. “There are no words to express our gratitude.”
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