‘She could have done anything’



Lilly Belle suffered from a rare disease known as MIOP. Here she is pictured with Beads of Courage, handblown glass donated to hospitals with terminally ill children. Each bead is earned after the child endures a procedure for their treatment.

Lilly Belle suffered from a rare disease known as MIOP. Here she is pictured with Beads of Courage, handblown glass donated to hospitals with terminally ill children. Each bead is earned after the child endures a procedure for their treatment.

Tina Jernigan could picture it. She could see Lilly Belle Kulungian years from now as a doctor. Or a teacher, like her.

“The true Lilly Belle was extraordinary,” Jernigan, a Hayden Elementary teacher said. “She wasn’t just this little blind girl. She could see a lot better than people who have vision.”

As a baby, Lilly Belle was diagnosed with Malignant Infantile Osteopetrosis (MIOP) which affected her ability to see, and on July 18 she passed away from medical circumstances unrelated to her disease.

The hundreds of people who attended Lilly Belle’s funeral were proof of how, in just five years, the little girl changed lives.

“She put a smile on everyone’s face the minute she walked in the door,” Jernigan said. “The students would look for her in the morning. She enjoyed being around people and people enjoyed being around her.”

And, even though Lilly Belle was blind, Jamie Hampton, teacher of the visually impaired with the Blount County School System, had high hopes for her.

“I really believed she would be valedictorian of her class,” she said. “Being blind wasn’t a disability for her because nothing was going to stop her. ”

Her teachers saw how intelligent Lilly Belle was, while she was teaching others along the way, and Jernigan says a lot of Lilly Belle’s progress is thanks to her mother, Christal.

“Christal has been a big advocate for Lilly Belle,” Jernigan said. “While some would have sheltered their child who had a disability, Christal knew Lilly Belle needed early intervention and she encouraged it.”

Now, Christal is hoping Lilly Belle, with her intelligence and courage, has left behind an example to the community that advocating for your child can lead to a better life.

“Talk with teachers and administrators because I think people with disabilities need to be treated on an individual basis,” Christal said. “Lilly Belle was not a textbook case. She was more bold and brave than most grown people. She never once said ‘I want to be like everyone else.’”

Jernigan said Lilly Belle, despite her vision impairment, could do anything anyone else could do.

“She loved school and her friends. She loved to color, paint, read, and swing. She loved to do everything a normal kid loved to do, and she was good at it,” Jernigan said.

Hampton says she will never again see a child sliding down a slide on a playground and not think of Lilly Belle.

“She did everything with gusto, and when she was sliding she would ask, ‘Mrs. Hampton, are you watching?’”

Lilly Belle was a quick learner, according to Hampton. The little girl knew all the names of the students in her classroom and recognized people by their voices.

“It wasn’t difficult to teach her to do anything,” Hampton said. “She may have not been able to see, but everything else was heightened. She helped me not to dwell on the things that were going on in my life. She called me one time just to tell me that she had tried a hamburger and liked it, she was so excited about that.”

Christal says she taught those around her to be thankful and celebrate the little things.

“She made us realize that hug and that smile and that kiss at the beginning of the day – that was what was important,” Jernigan said.

Lilly Belle’s memory will live in on in numerous ways. For one, Hayden Primary will be planting a tree in her memory and supplying their library with special books.

Christal will also continue the Lilly Belle Braille Foundation that helps teach parents about the importance of blind literacy.

“I do hope I have a small library or center one day,” Christal said.

Another member of the Kulungian family who will help continue Lilly Belle’s legacy is her sister Delilah, 9, who wrote a book entitled, “Lilly’s World, The Perfect Match” – a story about how Delilah donated bone marrow to Lilly Belle.

All the proceeds from the book go to help the Bone Marrow Foundation and the Lilly Belle Braille Book Foundation.

Lilly Belle also has three other siblings to tell her story, including her twin sister Rose, and her brother and sister, Seathe and Hannah Patterson, both 14.

“She had an extraordinary way of reaching a lot of people,” said Jernigan. “She had no limits. She touched a lot of people and will continue to do so even though she isn’t here. She taught us a lot in her five years.”