She's only a second grader at Cordill-Mason Elementary School in Blue Springs, but 8-year-old Maggie Miller knows what it's like to attend class with every joint on her fingers, wrists and elbows hurting from juvenile idiopathic arthritis, a disease with no cure … yet.
What's happening to Maggie is this: “Her immune system sees healthy cells as bad, and her immune system attacks the healthy cells in her body,” explains Maggie's mom, Tammy Miller. “So her immune system is attacking all her joints.”
That's the bad news. The good news is: “We have been able to stop the spread of (the disease),” she says, recalling the disease spread quickly after Maggie was diagnosed with juvenile arthritis in October 2015. “We have been able to slow down the progression of the disease with a lot of medicine that she takes weekly, and every four weeks we go into the hospital and do an IV infusion treatment . ... and we do an injection of chemo every weekend to kind of suppress the immune system from attacking her body.”
How is Maggie coping with her affliction?
“Maggie is the strongest, bravest child I know. She deals with more than any 8-year-old should ever have to deal with. She has to deal with a lot of medicines, doctor appointments and physical therapy, occupational therapy and pool therapy,” Tammy says, recalling Maggie had two appointments this week and missed a lot of schooling and doing “fun things” with her friends.
However, the fun Maggie missed doing with her friends, she more than made up when the Dream Factory of Kansas City sent the Miller family, including her father, Duane, and her 11-year-old brother, Joel, to Orlando, Florida. There they spent March 11 to 17 visiting Disney World, Universal Studios and Sea World.
Then, there was the 80-acre Give Kids the World Village where Dream Factory and Make-A-Wish Foundation families stayed while in Orlando. There were “tons of fun things to do,” Tammy says, recalling the Village each night staged an elaborate party or celebration – like Halloween, with a visit from the Storm Troopers and other characters. Then there was Christmas in March, complete with Santa, snow, sleigh rides and much more.
Wearing Mickey Mouse ears to an interview earlier this week was soft-spoken Maggie who fielded a few questions. Her favorite park ride was scary “Splash Mountain.” Cinderella's evil stepsisters were her favorite meet-and-greet characters, because “they were ugly and stayed in character and acted evil.” And the ride she “hated” most: “The Tower of Terror,” which made her scream.
How did the trip of a lifetime affect Maggie, who says she would like to go to Los Angeles someday and see her two favorite TV personalities, Ellen Degeneres and Steve Harvey.
“It was really nice to go on this trip and get away from hospitals, doctors, therapy and just be a family and just have fun and let (Maggie) be a kid and do kid things for a while,” she says, noting: “We went to seven parks in that short time.”
On Saturday, May 6, Maggie and her team of walkers will be helping The Arthritis Foundation, which Tammy says has been “an amazing support system” for her family. For the second consecutive year, Maggie's team of fundraisers are participating in the annual “Walk to Cure Arthritis, a community fundraising 5K walk. The event begins at 9 a.m. in the dinosaur section of Worlds of Fun before the park opens.
What's ahead for Maggie?
Says Tammy: “We are going to continue our treatment. Our goal is hopefully to get (the disease) to go into remission so that we can go into a medication remission and there be no signs of the disease. Then hopefully, we can start weaning off some of those medicines and stay in remission.”
What has already begun as a fun-filled year for Maggie will continue next month when Maggie spends June 5 to 8 at The Arthritis Foundation's Camp Joint Adventure at Lawson, Missouri. She will be attending camp (where memories are made) on a scholarship. One of her memories, no doubt, will be swimming, because that's her favorite pastime and doesn't put much pressure on her joints.
“(Maggie) is looking forward to participating in the 5K walk and going to camp this summer in order to be with other kids who understand her disease,” Tammy says. ...“She has a real strong support group of friends, and has told her class what her disease is, how it affects her and why she is away from school sometimes because of appointments. She has to miss all day on infusion treatment day. Then she is worn out afterwards.”
Will Maggie's condition worsen?
“With the advancement in medication treatment, we hope we have been able to catch it in time, get on the right medicine in a timely fashion and that we have the disease under control,” Tammy says, explaining, “There is always that chance medicines will stop working, and we pray that won't happen. But if it does, we will regroup, find a new treatment and try it. ...It's all about trying to find the right combinations of medicine. We are very lucky we were able to slow down the disease before it got to any other joints.”
-- Retired community news reporter Frank Haight Jr. writes this column for The Examiner. You can leave a message for him at 816-350-6363.