‘He couldn’t walk, couldn’t talk’: Mom wants parents to be aware of rare disease

Posted at 8:42 PM, Jan 26, 2018

JOHNSON COUNTY, Ind. – An Indiana mother is raising awareness after her son was diagnosed with an uncommon disease that affects the heart, according to WXIN.

Jamie Jones, 8, was diagnosed with Kawasaki disease in October 2015.

The disease was misdiagnosed several times before doctors said he had Kawasaki disease.

"It started with a fever," said Jamie's mother, Jessica Jones. "We took him to multiple ERs and urgent cares and they kept telling us it was just a viral infection. They were giving him antibiotics that weren't making him any better. He couldn't walk, couldn't talk and I knew something was off with him because he just wasn't getting better."

Dr. Sanjay Parikh, the director of pediatric cardiology at Peyton Manning Children's Hospital, said Kawasaki disease is more common than people think. He said in an average year, he sees nearly 15 patients with the disease.

He said symptoms of the disease include a high grade fever for several days, a skin rash on the fingers and toes, red eyes and changes in the tongue and lips.

Additionally, he said the disease affects the heart and liver.

"It has to be treated with intravenous immunoglobulin in the first week of illness," said Dr. Parikh. "That's the important issue. If treated within that one-week window we can prevent significant complications from the disease."

Jones wasn't diagnosed within that one-week window, and the disease began to affect his heart. He now has to take blood thinners every day and cannot participate in the sports he used to.

"It's very important for me to raise awareness so that no other child or family has to go through what we went through," said Jones. "Not only was it very traumatizing to experience watching your child go through something like that, but also knowing that their life is forever changed. It's not something that gets better over time; it's a forever thing."

Dr. Parikh said if Kawasaki disease is not treated promptly, it can increase a person's risk for early-onset heart attacks. He says those with the disease can have a heart attack as young as 3 years old.

"If you feel like something is not right or your child's not getting better, question it," said Jones. "If they have a fever for five days, bring up Kawasaki disease. It doesn't hurt to question it."