Eleven-year-old Jonah was escorted during his graduation ceremony at Flint Hill Elementary School by his brother, 15-year-old Austin who attends Eastside High School. Family, friends and classmates celebrated as the Eastside High band played and Jonah graduated. Special Photo
COVINGTON -- Fight like Jonah!
That's been the message at Flint Hill Elementary and Cousins Middle schools lately -- and for the last 10 years for the Barnett family.
When he was 13 months old, doctors diagnosed Jonah Barnett with a inoperable brain tumor in the brain stem. He was only given four weeks to live, and now he's 11 years old.
"Within three weeks, we went from having a normal child to having one who was knocking on death's door," said his mother Lynice Barnett.
She said that Jonah had already started to walk and talk, but doctors in their Dodge County hometown were concerned when the family pointed out his crooked smile and not being able to use his right hand. After initially thinking he might have had a stroke at birth, doctors then discovered the tumor.
"Nobody would take us in the beginning," Lynice Barnett said about their initial search for medical treatment, but St. Jude Children's Research Hospital in Memphis told her that if he lived five more weeks, they would take him.
The family called the hospital on the first day of the fifth week to make an appointment.
"He was the first patient under the age of 2 they gave radiation to," said Barnett, who has lived in Covington with her family for four years. "About five years ago, they told us, they've allowed other kids to go through it now, too."
Soon after treatment, Jonah had the base of his skull removed to relieve pressure and was placed on a ventilator. Afterward, he underwent chemotherapy.
The family then got some more bad news -- doctors weren't sure if the treatment would help, if he would be able to walk or talk or if he would be able to eat by himself ever again.
Then, Jonah started to sit up, tried to hug his visitors and eventually walked using a walker. The tumor has partially paralyzed his tongue, face and right side of his body, so it has limited some things he can say, and he requires extra attention when he is eating. The family has used sign language with him since he was about 15 months old.
"He is the longest living patient with this tumor at St. Jude's," Barnett said.
The tumor never grew until two years ago. That is when doctors noticed the original tumor beginning to grow again and other tumors appearing.
The family still travels to St. Jude's every three months and Children's Hospital of Atlanta at Egleston every month. A nurse from Abbey Hospice in Social Circle also visits every week for blood work, and Jonah takes a liquid chemotherapy at home.
"We allow Jonah to make the decision each month if we order more chemo," Barnett said. "We've never walked in his shoes, so we let him make that decision."
She said they are very blessed because her husband Patrick works, and she has been able to stay home to take care of Jonah and their other three children -- 15-year-old Austin who attends Eastside High School, 7-year old Carson who also attends Flint Hill and 18-month-old Anna. They also are involved in their church, High Point Baptist Church, especially in the youth group and children's choir.
Barnett said that in August, St. Jude's told the family that Jonah only had about six to 12 months to live and didn't even want to make his appointment for January.
"But they said, 'Everything we tell you, he does the opposite,'" she said, adding that the family decided to keep the January appointment. "He's hanging in there. Prayers got us this far."
Still, the family is trying to make all of his wishes come true.
"He loves school," Barnett said. "When he was in fourth grade, he was so excited for middle school and talked about having a locker, maybe because he watched his older brother. He would always draw himself in middle school with a locker."
Recently, Flint Hill Elementary School allowed him to graduate early, so he could live that dream of going to middle school and having a locker.
"He has worked very hard this year homeschooling and attending some classes at Flint Hill so that he can graduate early and go to middle school," said Kelly Walker, assistant principal at Flint Hill and also his speech language pathologist. "I am amazed by his spirit. He never lets anything get him down."
The school held a graduation ceremony for him, complete with a cap and gown and a performance by the Eastside High School band.
"Graduation day was emotional on several levels -- joy, heartbreak, love, gratitude," said Amy Hamby, whose son Benjamin made friends and a special connection with Jonah in school, connecting the families. "So many people came out to support them -- former teachers, paraprofessionals, friends, their church family, students."
Although Jonah completes most of his school work at home through several teachers and aides, he was able to visit Cousins Middle School on Friday for a special pep rally that in part honored him as the school's newest student. Then he served as special manager at the boys' basketball game that afternoon.
He expects to get a peek inside of his locker this week.
"This young man's wish for a locker has touched our hearts here at CMS," said Trista Hooten-Wilson, a sixth-grade teacher at Cousins. "We want him to have a real middle school experience. He could have wished for something grandiose, and yet he asked for a sixth-grade locker. This has been a very valuable lesson, reminding all of us to be grateful for all of our blessings, the tiny ones and the large ones."
Jonah also has been named an honorary police officer and firefighter in Henry and Dodge counties, and he's also an honor Southern Cruiser biker in Conyers. The nonprofit organization Joey's Toy Box in Newnan recently sent the family on Jonah's wish trip to the Great Wolf Lodge with an indoor water park in North Carolina.
"He's a blessing for a lot of people," Barnett said. "He teaches us to go slow and enjoy what's around you. You have to live literally one day at a time, like we're taught we should anyway."
Many students and community members are supporting Jonah by sending him postcards, since his favorite hobby is collecting them. He probably has thousands of postcards, including some from New Zealand, Africa and many states. Anyone else who wishes to send him post cards can send them to Flint Hill Elementary School, 1300 Airport Road, Oxford, GA 30054; Cousins Middle School, 8187 Carlton Trail NW, Covington, GA 30014; or the Newton County Board of Education Office, Attention: Sherri Davis-Viniard, P.O. Box 1469, Covington, GA 30014.