Tara's Triumph

The will to fight was instilled in Tara ever since day one.

Born a premature triplet at 26-weeks and weighing just under two-pounds, she required resuscitation in the delivery room and was put on a life-sustaining ventilator for weeks while undergoing numerous surgeries and medical procedures to keep her alive. Finally, after three months, Tara was strong enough to go home with her parents.

At 18-months-old, she was diagnosed with cerebral palsy and spastic quadriplegia, a neurological disorder which impacted her movement and muscle coordination.

“This means that she cannot control her body very well on her own and has a lot of muscle tightness in her arms, legs, head and neck,” said Kelly Milano, Tara’s occupational therapist at Blythedale Children’s Hospital.

It’s very difficult for her to move around independently.”

While in elementary school, she started to vocalize her wants and needs with a few words at a time, including her desire to explore her environment and be independent. As a result, she attempted to learn how to operate a power wheelchair, and despite her best efforts, it proved unsuccessful because of her inability to master the hand controls.

As time passed, Tara’s independence waned and she increasingly relied on others to help her get around. But, she remained resilient.

Last April, she underwent back surgery and - when she was deemed medically stable - was admitted as an inpatient to Blythedale Children’s Hospital for complex post-surgical rehabilitation. Tara received intensive physical therapy to work on trunk alignment, sitting and symmetry; occupational therapy to improve her upper extremity function and resume power wheelchair training; plus, speech therapy to monitor ongoing use of her eye-gaze system - an augmentative and alternative communication (AAC) device that helps her express her feelings and gives her a voice.

The teen thrived and was discharged home to her family in May.  Plans were put in motion for Tara to attend Blythedale’s unique Day Hospital program (uniquely designed for kids who live at home but still require medical and/or rehabilitative care). But Tara had one stipulation. She wanted to return in the summer so she could attend her prom and graduation at North Rockland High School alongside her brother, sister and friends.

It was agreed.

“She was able to do all the fun, end-of-year stuff a high school student normally does,” said Milano. “Tara then came back to us in July to see if power wheelchair mobility could be in her future, as well as to participate in Blythedale’s innovative assistive technology program.”

Back at Blythedale, she resumed training on the power wheelchair for one-hour-a-day, five days a week and slowly began to make progress. Tara learned how to navigate hallways, make turns and familiarized herself with a specialized drive control customized to her body and abilities.

"Her reaction to this was pure joy and excitement because she was very patient as we worked with her on proper seating and figuring out what worked," said Milano.  “She had more control of her head, than her hands or arms, so we chose a very sophisticated head array system, like a head rest, with special sensors and switches built inside so as she moves her head or touches a certain part of the system, she is able to travel through space.”

As she continued this training, Blythedale’s interdisciplinary team kept motivating Tara to work toward her goal of independence through continued therapies and introduction to the Hospital’s new Assistive Technology center, home to the most Assistive Technology Professionals (ATP) of any specialty children’s hospital in the northeast. Progress was made in use of her communication device - a Tobii Dynavox i12 with eye gaze, and the Communicator and Snap Plus Core First apps. In addition, the Assistive Technology team worked closely with Tara, her family and her therapists to select a power wheelchair for personal use (through insurance funding), that would optimize the teen’s newfound mobility, while allowing for her communication device to be mounted and easily accessible.

“This team is very knowledgeable and serves as a great resource to staff, parents and the community in order to find the best for each child,” said Milano. "Our ultimate goal is to not have an adult help Tara get around and I couldn’t be more proud of what she’s accomplished as a fierce and determined young woman. It’s only the beginning.”

On Halloween, Tara spent her last day at Blythedale Children’s Hospital after months of successful power wheelchair and assistive technology training. She returned to North Rockland High School where she’s continuing her “Life Skills” program, specially designed for people with disabilities to complete additional vocational and educational training through age 21. 

As for Tara’s future after school? She hopes to one day find a job and live on her own.