17-year-old defies expectations after diagnosis

BELPRE – Natashia Barber recently celebrated her 17th birthday with a group of lifelong friends.

She watches her favorite TV shows on an iPad and attends drama, choir and band classes at Belpre High School. The shelves in her room are adorned with pictures and trophies from cheerleading and baseball.

It sounds like the life of a typical teenage girl – not someone whose life expectancy at birth was just 90 days and who was diagnosed at 23 months old with a condition known as anencephaly, meaning she was born without either brain hemisphere.

“From the beginning … I just wanted her to be accepted for who she is, how she is,” said Tashia’s adoptive mother, Bonny Barber.

Unlike most anencephalic children, though, Tashia’s skull fully formed. Her brain stem controls involuntary actions like breathing and heartbeat, and although she is legally deaf and blind, she does respond to stimuli.

“She can see – she tracks SpongeBob quite well,” Bonny said.

Ewing School physical therapist Adrienne Nagy, who has worked with Tashia most of the girl’s life, said the child must have some cerebral tissue, even if it doesn’t show up on scans.

“She recognizes people. Sometimes she knows cause and effect. She anticipates things,” Nagy said.

On her cellphone, Nagy has a video of Tashia intentionally causing a toy to operate. She calls it “the most incredible video I’ve ever seen.”

“I’ve never seen anything like Natashia,” she said.

Nagy credits the “incredible attention” of the Barbers and the nurses who help them care for her with Tashia’s performance. They exercise her joints to prevent stiffness and move her among different pieces of equipment, including one that allows her to stand in an effort to strengthen her bones and heart.

Tashia has attended Belpre City Schools since kindergarten and developed a circle of friends that includes two of the Barbers’ granddaughters as well as other girls who attend her birthday party sleepover each year. This year, the girls took turns reading to Tashia on a recorded book as her gift.

“The kids talk to her and she just laughs at them,” Bonny said.

And it isn’t just that “posse” – as Tashia’s dad Malcolm calls them – that has welcomed the girl as a part of their lives.

“She has her own group of friends, but all the kids are aware of her,” said Stephanie Stephens, an independent licensed practical nurse who cares for Tashia at home and while she attends classes at Belpre High School. “They hold the door for her.”

Tashia goes to drama, band, choir and gym classes, environments where other students can freely interact with her.

“The school has been absolutely phenomenal,” Bonny said.

Tashia has been part of cheerleading squads, with her family working fundraisers to pay for her uniform. She played baseball for Team I.C.E. (I Can Excel), with one Barber granddaughter hitting the ball off a tee and the other guiding Tashia’s chair around the base paths.

Malcolm recalls someone asking him not long after the family took Tashia in whether they had bitten off more than they could chew. His response at the time was “Time will tell.”

Not long ago, the same person answered his own question. “He said, I guess you had to handle it,'” Malcolm said.

Bonny said the family has simply done what they had to do for Tashia. “We changed priorities in our lives after we got her, because her needs had to come first, always,” she said. “She truly is our gift from God.”