HOPKINTON, N.H. (AP) - Like most 7-year-olds, Georgia Childs loves to play outside, especially climbing the trees in her yard on Gould Hill Road in Hopkinton.
On a warm July day, Georgia reached up for a low branch on a tree in the front yard and started climbing with a smile on her face. Her little sister, Vivian, wasn’t far behind, and their dog, a fluffy Great Pyrenees mix named Winter, wandered over as well.
Georgia pressed her left foot onto the tree’s trunk for grip and leverage and then pulled herself up with her arms. Once she was perched safely on the branch, she turned toward her parents standing nearby and smiled again, her eyes peeking out from behind strands of light brown hair.
This is Georgia in her element - climbing trees, running through the sprinklers, riding her scooter up and down the driveway, gliding over pink and white chalk drawings that she and her sister created on the pavement.
But not every day is spent outside. Some days are spent at Children’s Hospital in Boston, far from the trees in the backyard.
Georgia was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA) about six years ago. It is a severe, chronic auto-inflammatory disease for which there is no cure. The disease doesn’t carry the same joint pain that adult arthritis does, but can trigger a life-threatening secondary condition called macrophage activation syndrome, which is a severe inflammation of the immune system.
This winter, Georgia will be the youth honoree in the Arthritis Foundation’s Jingle Bell Run in Concord in December.
For Georgia, some days and weeks are better than others. When Georgia’s health becomes unstable, she can be admitted to the hospital and monitored for days.
“She’s much better now,” her mom, Sabrina Dunlap, said this July, which was Juvenile Arthritis Awareness Month. “But for years, we could not get it under control.”
It started with a fever when Georgia was about 13 months old and the family lived in Arlington, Mass. Dunlap and her husband, Rob Childs, also noticed what looked like hives forming on Georgia’s arms.
They took Georgia to her pediatrician, who thought it was likely a virus, and then to Boston Children’s Hospital, where a doctor agreed. Sabrina and Rob took Georgia home, but the fever wouldn’t break.
“She couldn’t verbalize what she was feeling, but clearly she felt horrible,” Dunlap said.
The family returned to Boston, and Georgia was admitted for 10 days. Diagnosing the disease proved a challenge, leaving Sabrina and Rob to wonder what was happening to their child.
“Every day they were doing labs just to try and figure out what this was,” Dunlap said.
Doctors used a bone marrow biopsy to rule out leukemia. They were able to eliminate other possibilities, narrowing it down to where SJIA seemed likely to be the case.
“That first year was tough because we didn’t understand what it meant and you have this false hope that it’s going to go away,” Dunlap said. “It was a lot of trial and error.”
The second year wasn’t any better. Georgia was admitted to the hospital eight times between October 2014 and March 2015, including a three-day stay in the intensive care unit. Dunlap said by the time Georgia was 3, “we sort of maxed out all reasonable options.”
Fortunately, this was right around the time that Georgia’s health began to stabilize. She went down to a once-monthly injection to fight off the inflammation.
Her family, which now included her little sister, moved to Hopkinton about four years ago. Dunlap, an attorney, had grown up in New Hampshire and moved to Massachusetts for law school.
Dunlap, who serves on Hopkinton’s select board, said she always wanted to come back, and the family moved into her grandparents old house, which was built in the 18th century and long ago was a tavern frequented by travelers passing through the area.
Georgia’s health has been steady in the years since relocation. They still go to Boston Children’s once a month for the anti-inflammatory injection and to have blood labs done.
It doesn’t faze Georgia.
“She is used to IVs and being poked and prodded a lot,” Dunlap said.
Georgia’s future with the disease is mostly unknown because there is no cure. She does not currently experience the joint pain commonly associated with arthritis, but it is a possibility down the road. Dunlap said some children diagnosed with SJIA go on to develop rheumatoid arthritis as adults.
“There are some kids who outgrow it, but our doctors said not to count on that,” she said.
Georgia is looking forward to the Jingle Bell Run in Concord in December, which raises money for research through the Arthritis Foundation.
The family had participated in the event each year in Boston. Her team’s name is “Pancakes” because chocolate chip pancakes are her favorite food. People who want to support her team can visit events.arthritis.org/team/pancakes.
As the youth honoree, Georgia will talk a little bit about how SJIA has affected her life and hopefully inspire other kids who are fighting the same disease or perhaps a different one.
The main goal is to raise money for research and awareness about juvenile arthritis in all of its forms.
“There is a shortage of pediatric rheumatologists throughout the U.S., and we are very lucky we live in the orbit of Boston, because there are parts of the country where people drive 10 hours to get to a doctor,” Dunlap said. “Or you’re seeing an adult rheumatologist and they’re not trained to treat kids, obviously.”
Georgia is going back to Harold Martin School this fall for first grade. Until then, she’ll spend the rest of summer climbing trees with Vivian and chasing Winter around the yard.
Online: https://bit.ly/333yFCP
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Information from: Concord Monitor, http://www.concordmonitor.com
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