Community rallies around 12-year-old battling rare disease
Meadow Burley shows off some of the get-well cards people have made to deliver to Caelan. Burley, 12, has been organizing card drives and lemonade stands for her Ravenwood Elementary classmate since she heard of his disease last week.
While Caelan Rainey fights for his life inside a hospital room, his friends are fighting for him outside.
Rainey, 12, is fighting complications caused by Methicillin-resistant Staphylococcus aureus (MRSA), a type of staph bacteria that can cause numerous types of infection, according to the U.S. Centers for Disease Control. He’s been in a medically-induced coma at Providence Hospital since June 2.
When she heard about Caelan’s condition last week, Meadow Burley, 12, said she immediately started thinking of ways to help. By the next day, she’d recruited her brothers and several neighborhood kids to start a lemonade stand for Caelan.
“There wasn’t a lot of other stuff I could do,” said Burley, who was in Josh Hegna’s sixth-grade homeroom class with Caelan last year at Ravenwood Elementary.
On a hot, sunny June 11 afternoon, Meadow and several kids set up lemonade stands on each corner of the busiest intersection in Eaglewood Subdivision. By early evening, they’d collected hundreds of dollars and dozens of handmade cards from well-wishers.
Meadow’s grandmother, Joni Burley, said once people realized what the stands were set up for, money started pouring in.
“Two dollars went away and out came a twenty,” she said.
Brenda Gabbert, 15, and Kevin Gabbert, 12, were among the half-dozen Eaglewood kids who helped get the lemonade stands going.
“We just wanted to do what we can to help the cause,” Brenda Gabbert said.
Her brother explained helping Caelan’s cause just seemed like the right thing to do.
“We know people would do this for us,” Kevin said.
According to Caelan’s dad, Rodney, doctors told him Caelan’s initial infection was complicated due to a recessive gene that’s causing the boy’s immune system to attack healthy cells. Rodney said doctors said the rare condition had only been seen a few times in medical history.
“The combination of this infection and disease is only the 5th documented case in the world,” Rainey wrote on his Facebook page, which he’s using to post updates on Caelan’s progress.
Caelan started complaining of flulike symptoms a week before he was hospitalized, Rainey said. His symptoms kept getting worse, and within a week Caelan was going into septic shock, for which doctors put him in a coma. As of Tuesday, June 18, Caelan remained in the coma as his team of 10 doctors worked to stabilize his condition. Even if he beats the infection, Caelan will likely face an uphill battle. His dad said Caelan will likely lose his fingers and toes and need skin grafts. He could possibly need a bone marrow transplant and will also likely have to endure nearly a year of chemotherapy.
“It’s going to be a tough transition,” Rainey said.
Rodney and his wife, Theresa, are asking for cards they can put in their only child’s room for when the boy wakes up. They’ve also set up an account at Credit Union 1 where people wishing to help can donate (For the Benefit of Caelan Kole Rainey #540336).
The staff at Ravenwood Elementary has already begun stitching together support for Caelan.
“Just about every one of his teachers has stopped by,” Rainey said.
On Saturday, June 22 from 10 a.m. to 2 p.m., Ravenwood staff members will hold a quilt party for Caelan at the school. Along with cards, people will be able to make personalized quilt pieces, which will be sewn together into a get-well quilt by JoEllen and Janine Walters.
“The support we’ve gotten is overwhelming,” Rainey said.
Rainey has been posting daily Facebook updates about Caelan, who before getting sick enjoyed soccer, baseball, video games, singing in the choir and playing violin.
“He’s a bright kid, a caring kid,” said Rainey. “From all the people who have been here you can see he really did make a difference and an impact on the lives of the people he met.”
On June 18, Rainey wrote of “slow, measured progress” in the battle to heal his son. He said he keeps an upbeat attitude and prefers to think of his son’s battle in a positive light.
“He’s put up a hell of a fight,” he said.
From Caelan’s teachers to local businesses, Rainey said he’s had messages of support from across the Chugiak-Eagle River community.
“It just goes to show what kind of community we live in,” he said. “We can’t say enough. It’s overwhelming the friendship and support we’ve gotten.”
But perhaps what touches him most are the efforts of Caelan’s young friends and classmates, who sprung into action on their own the moment they heard Caelan was sick.
“The character in these kids is just amazing to us,” he said.
Meadow Burley still has plenty of lemonade left to sell, and she’s been holding as many fundraisers as she can since she heard about Caelan. In just a week’s worth of work, her efforts had already raised more than $1,000.
And she’ll be at Ravenwood Saturday to help make cards and sell more lemonade for Caelan’s cause.
“I just want to help my friend,” she said.