In 2011, shortly after Owen Haymond turned 4, he started showing unusual symptoms. He was tired, extremely weak, and sore.
“He could barely stand and walk, and had trouble rolling over in bed at night and during naps,” said his mother, Kelly Haymond. “He had a scratchy-looking rash on his face.”
Owen saw an allergist and a dermatologist, as well as his pediatrician – who ordered blood work. “The blood work didn’t show anything right away, so the doctors checked for influenza, strep, and other communicable diseases,” Haymond recalled. “All this happened within a three-week period during which Owen’s symptoms kept getting worse and worse. He was unable to walk and function on his own. He needed help with everything.”
When one of the blood tests revealed Owen’s muscle enzymes were elevated, his family rushed him to Lutheran General Hospital’s pediatric emergency room.
“By this time, Owen’s rash had gotten much worse, and he was completely immobile. I remember the doctor in the ER doing a test that had me so scared,” she said. “It was simple. He wanted Owen to sit on the floor and try to get up. He couldn’t do it. I remember feeling completely helpless and standing there watching him cry as his aching muscles wouldn’t allow him to just stand up.”
More tests ruled out several potential causes.
“It was decided it was an autoimmune disease, mainly because his MRI showed extreme muscle inflammation in his lower body and in his torso. We finally had somewhat of an answer,” Haymond explained. Doctors at Lutheran General transferred Owen to Dr. Karen Onel at the University of Chicago Medicine Comer Children’s Hospital, where he was diagnosed with juvenile dermatomyositis (JDM), a rheumatic disease that affects the body’s muscles and skin.
“We had no idea what it was or what we were in for over the next few years,” Haymond said. “His rash, the no walking, losing the ability to do anything on his own like use the bathroom or eat. It all made sense after hearing about JDM. We were so thankful we finally had a name for what he had! Just to name it meant that we could start to treat it and we were so thankful.”
Haymond says Onel has provided her son with amazing care at Comer Children’s.
“We are thankful for Dr. Onel for her ongoing care and compassion for our family during Owen’s diagnosis and treatment. We truly feel like she will always play a special role in our family and we consider her one of our heroes.”
One moment, in particular, stands out for Haymond. Lutheran General had sent a CD with MRI images to the family and, instead of just telling the family what the MRI showed, Onel sat down on a Sunday with the family and they looked at the images together on the family’s laptop.
“Dr. Onel patiently answered all of my questions and assured me he’d get the treatment he needed and he’d be better soon,” she recalled.
Treatment began immediately, first as an inpatient and then as an outpatient in Comer Children’s Special Procedures Area (SPA).
Over the next week, Owen got the medication he needed, and passed the time riding around the hospital floor in a wagon. “Because he couldn’t walk, the wagon was our mode of transportation for getting out of his room,” Haymond explained. “He loved those wagon rides and they were a lifesaver for our sanity and getting out of his hospital room.”
“The staff at Comer is nothing short of amazing,” she said. “We got to know the staff in the SPA very well and they quickly became family to us. Going to get treatments became a family trip that we actually looked forward to. Obviously, no child ever wants to get an IV or blood drawn, but because the staff in the SPA was so awesome, we were never scared and looked forward to seeing our second family.”
Owen is now thriving, his mother says. Although JDR never goes away completely, he is down to one medication and may wean from that at the end of the summer.
“Owen is doing amazing! Because of the care he received from Comer Children’s under the direction of Dr. Onel, he’s living the life of a normal, strong 8-year-old. It’s hard to believe everything he’s been through,” Haymond says.