Angel with a fighter’s spirit
In February 2009, Janey was diagnosed as having Juvenile Myositis (JM), an autoimmune disease in which her body’s immune system attacks its own cells and tissues. For many of JM patients, it is a daily challenge to just stand up and sit down because of the disease’s affect on their muscles. They will be sore, tired and contract a skin rash.
The rare condition affects approximately two to four children out of every million and according to www.curejm. com, there are an estimated 4,000 children affected in the United States alone.
Symptoms began in February 2008 when Janey was just four. She was complaining of lower back pain and could not run properly. She was also experiencing problems falling and had difficulty climbing stairs. Her parents, Lindsay (Debault) and Kenny Cleveland, took Janey to her pediatrician, but a mother’s intuition was getting the better of Lindsay.
“I videotaped her attempting to run,” Lindsay said. “She couldn’t run correctly because the disease was causing her muscle to stiffen up.”
The mother of three then decided to look up children rheumatologist and came in contact with Dr. Lisa Petiniot at Dell Children’s Hospital in Austin.
After a full round of blood and physical tests the young girl had to undergo a muscle biopsy and MRI for Dr. Petiniot to clarify that Janey did have JM.
“I loved her doctors and felt this was the right spot (for us to be),” Lindsay said. The family did have the diagnosis confirmed by two other rheumatologists to be sure.
Some children will go into remission, while others will battle JM their whole life. Complications from the disease can be fatal. Medications can alleviate the symptoms, but there is no cure for Juvenile Myositis. And that has been a hard pill to swallow for the Clevelands, but Janey has remained a trooper. She has to endure monthly six- to eight-hour long IV treatments, weekly injections and numerous daily medications.
“She sits quietly and never complains during treatment,” Lindsay said.
Janey agreed that the treatments have gotten easier.
“It used to hurt, but they don’t anymore,” she said.
For the disease to be in remission, many things have to be in line, according to Lindsay, and that includes lab work and blood levels of all sorts. Any small thing could cause Janey’s immune system to begin attacking her body again.
“Since being on the correct dosage of medication, Janey has not fallen or had anymore pain,” Lindsay said.
“Her mobility has improved,” Lindsay said. “She did undergo some physical therapy to get her muscle strength back.”
Janey’s parents want her to live as normal of a life as any girl her age. She is enrolled in dance and wants to play softball this spring.
“I never want it to feel like this is a disability to her,” Lindsay said.
With as much as she’s had to go through, it is no surprise that when she grows up, Janey wants to be a nurse.
“I want to be a nurse because my mom is a nurse and because Joely wants to be a nurse,” Janey said.
JM has affected Janey’s physical development, but doctors believe that she will catch up to the height and weight percentages suitable for her age as she grows, according to Lindsay.
The five-year-old attends Discovery Days at Rockdale’s First Baptist Church, but when the H1N1 (Swine flu) scare hit Milam County, Janey’s mom had to pull her out of classes.
“We really have to watch those things because her immune system could be so affected,” Lindsay said.
With little medical experience, with the exception of Lindsay, who is a registered nurse, the family felt overwhelmed with Janey’s condition.
No matter, they have been very supportive, Lindsay said.
Janey’s two sisters, secondgrader Jessa and two-year-old Joely, along with her grandparents Lisa and Craig Debault and Joe Wayne and Sarah Cleveland, have all been great help.
Along with her family, many of Janey’s friends have helped her out too, through the Cure JM Foundation.
Cure JM Foundation is an all-volunteer foundation created and managed by families of children with Juvenile Myositis. The foundation’s mission is to provide support for families coping with JM, raise awareness of JM and fund research that will ultimately lead to a cure.
Little Janey and her family have made it their personal goal to try and raise $2,000 for the Cure JM Foundation. They started just a couple of weeks ago and are happy to say they might have to increase the goal.
“We are going to raise her goal because we have had such an amazing response,” Lindsay said.
“This has made her a completely different kid, but for the better. I am proud at how strong she has been throughout the whole process,” Lindsay said. “I just hate she had to be put in a situation this young.”