Independent Amanda

Teen Triumphs at Blythedale with Technology, Tenderness and Time

Amanda laughs while using her braille typewriter to compose a project for Mt. Pleasant-Blythedale School at Blythedale Children's Hospital.

Graduation is a time to reflect on past achievements while looking ahead to new beginnings.

For one special 12th grader at the Mt. Pleasant-Blythedale School, located on the grounds of Blythedale Children’s Hospital, her future is paved with potential.

“I will be moving to a new house and have my own room,” said Amanda. “I might even volunteer or attend job training.”

The Dutchess County native received her high school diploma in June following an often complicated journey.

family together at graduation

At birth Amanda was diagnosed with otopalatodigital (OPD) spectrum disorder, a rare genetic disorder that leads to abnormalities in skeletal development. Amanda spent her first few months hospitalized, where she underwent surgery on her eyes, and to correct a cleft palate.

“We weren’t sure if Amanda would live or not,” said Dorian, Amanda’s aunt. “Then she started kicking the nurses as they tried to draw blood from her and we thought, that child’s going to live.”

After being discharged home, Amanda’s loving family helped her blossom into a kind, fun-loving and compassionate little girl. But, over time, the degenerative nature of her disease claimed her vision and hearing, necessitating the insertion of a cochlear implant. Additional medical setbacks, including diabetes, scoliosis and a compromised immune system, challenged Amanda further.

Amanda’s complex medical care made finding an appropriate school difficult, until Blythedale Children’s Hospital and the Mt. Pleasant-Blythedale School was suggested to her family.

blind woman walking down the hall

“Blythedale afforded a safe environment for Amanda, combining a sense of normalcy and the full picture for her healing experience,” Dorian recalled.

The now-teen was admitted to Blythedale’s Day Hospital Program in October 2016 for medical management of her complex diagnosis, as well as physical, occupational and speech therapies -all while attending the on-site school to continue her education and utilize services designed for the visually impaired.

“She certainly became more independent while here, strengthening her orientation and mobility skills with a walking cane,” said Rosemary Williams, special education teacher at Mt. Pleasant Blythedale School. “From the moment she steps inside the building, she walks unassisted to the nurse’s station to get her blood levels tested and then walks back to school.”

young woman using typewriter

Bridging the technological divide has also been Amanda’s specialty. She successfully reads and writes braille at grade level, while implementing technology (e.g. iPhones, iPads, Snapchat) to participate in class, work in the school office and keep in touch with friends.

During Amanda’s treatment at Blythedale Children’s Hospital, her expertly trained medical and nursing staff excelled in stabilizing her blood sugar levels and maintaining her insulin pump for diabetes management.

young woman with nurse

“We continually assess Amanda’s needs throughout the day and are committed to providing exceptional care to her and every patient,” said Jennifer Pino-Fornez, a registered nurse for Blythedale’s Day Hospital Program. “This is a wonderful facility that works with each family to create an individualized health plan that will meet their child’s needs while enhancing their abilities.”

As Amanda transitions into the world on her own, her family is grateful for the partnership between Blythedale Children’s Hospital and the Mt. Pleasant Blythedale School. “I don’t think there’s any better place than this exceptional hospital and school that both provided such a loving environment,” said Dorian. “They saved another life and we live in endless gratitude for all that was done for Amanda.”