Early intervention helps little girl take steps toward success

PROGRESS — Three-year-old Kinsley Ely of Steubenville is enjoying preschool at the Steubenville STARS program through Steubenville City Schools, which she recently joined after meeting her goals with the Jefferson County Council’s Early Intervention Program for Developmental Disabilities. — He contributed

STEUBENVILLE — When Kinsley Ely blew out the candles on her birthday cake on Oct. 7, it marked a major milestone in the little girl’s life.

At just 3 years old, Kinsley faced many obstacles. Born with Hirschsprung’s disease, a condition that affects the large intestine, she has had multiple surgeries and uses a colostomy bag. This significantly affected her ability to absorb nutrients and maintain her energy levels. However, after working with the early intervention program at the Jefferson County Board of Developmental Disabilities, she is starting to reach her goals.

Kinsley, daughter of Kayla DeGarmo and Jason Ely of Steubenville, started kindergarten with the Steubenville STARS program, which is offered through Steubenville City Schools. The program helps students with disabilities integrate into the school community, and Kinsley is already thriving in her classroom. She goes to school two days a week, makes friends and is off to a great start in her education.

Mom Kayla recalled Kinsley’s diagnosis just three days ago, saying there weren’t enough nerve cells in her colon to function and it led to countless surgeries. She also has to wear a colostomy bag, while her caloric intake has been low and has left her with little to no energy. She also wears a port and uses an IV for liquid nutrients, plus protocols dictate that she be treated for fever at Children’s Hospital of Pittsburgh when she’s sick. After being referred to the EI program through the hospital, Kinsley began working with EI supervisor Neysa Rogers after her first birthday and worked to overcome her obstacles.

They met twice a week, then the sessions increased to monthly as Kinsley made more progress. Sessions were held at home or at Jim Woods Park, incorporating play activities so she learned to step, stand up and become more independent. There were challenges and Kinsley was initially unresponsive to Rogers’ help, but eventually they would form a bond.

“Neysa contacted a dietitian and Kinsley underwent surgery and received nutrition at night. He is now on IV fluids and taking vitamins and can eat solid food.” DeGarmo said, adding that Kinsley’s condition has delayed his ability to walk. “Neysa gave me exercises and activities to do with her. Once we started strengthening his leg muscles, he was able to use a walker. The progress over time has been incredible, especially in just a few months.”

Rogers helped with respite care and other resources to help Kinsley get better. Little by little, the little girl became more and more independent.

“When she started walking, everything started flowing and she was walking, talking and running.” DeGarmo added. “When Kinsley first started school, Neysa thought it would be good for therapy.”

“He’s a young child with a developing medical condition,” Rogers commented. “She didn’t meet the benchmarks because her body wasn’t accepting food. Doctors rebuilt his intestine and now he can ingest more and use energy. It affected his landmarks and he wouldn’t crawl, walk or stand, but he learned to climb and walk. I am proud of her and her mother. Part of the process was teaching others not to do everything for her because they wanted to protect her, and we’re amazed at her progress.”

Although she and Kinsley’s father were a little hesitant to send the girl to school, DeGarmo said she has flourished in her new environment. DeGarmo also praised the STARS program, saying Kinsley works with an on-site nurse and enjoys going to school.

“They’re great with it and very hands-on, plus it’s a small class. He loves school and would love to go every day.”

Jamie Thompson, STARS preschool teacher, said Kinsley was actively engaged in the classroom and a quick learner.

“She adapts very well, is very vocal and tells us what she wants to eat and play with.” Thompson said. “He likes to color and draw, gets along with other kids and likes to play outside.”

Meanwhile, DeGarmo said Kinsley is like any other child who is loving, playful and enjoys everything from princesses to Peppa Pig. She is also very close to her two older brothers, Cameron and Noah, the latter of whom was born with a less severe form of the disease. However, he has since reversed himself after time and treatment and is healthy today. She said Kinsley’s next goal is to have her port removed and stop fluid treatments, and she was grateful to the EI program for allowing her daughter to thrive.

“I recommend EI to anyone, even if you feel you don’t need it. There are so many people who can help at every stage with physical therapy, occupational therapy and more. Kinsley had nothing but love for Neysa, and Neysa knew there were techniques and strategies to help her. I wouldn’t have known about it if it wasn’t for HER program.”

For information about the EI program, call (740) 264-5812.

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