“My toddler woke up one day and couldn’t walk”

Her son has a rare degenerative muscle disease, but Shermeen is determined that he lives life to the fullest…

“A few months ago ― in September last year ― my usually active 4-year-old boy, J, started to complain of pain in his thigh. My husband and I thought he might have sprained it while playing on the bouncy castle the day before, so reassured him it will go away soon.

After a few weeks, J started limping, especially when he was walking up and down the stairs. He also started showing less interest in his taekwondo class, which he used to be very passionate about. When we asked him why, he complained that there was a lot of kicking and punching in the class. For a while there, we thought he was just being lazy.

As J’s odd behaviour continued, his started having low-grade fevers, which fluctuated between 37.7 deg C and 38.1 deg C. This usually happened every time he woke up from a nap. He also broke out in a rash that resembled insect bites. Fearing that he might have gotten dengue fever, we took him to the hospital, but after checking him, the doctors told us it was nothing to worry about.

J’s fever continued for the next 12 day. In an attempt to cheer him one day up, we took him to a sand playground for a playdate with his friend. But he didn’t want to sit down and instead kept asking his friend to bring the toys he wanted over to him. It was then that we realised something was terribly wrong with our little boy and rushed him down to our paediatrician at Mount Alvernia Hospital and demanded that he be warded.

“I was freaking out on the inside the entire journey to the hospital because I feared the worse and didn’t know how I was ever going to break the news to my sweet boy.”

Our doctor ran a series of tests and asked us lots of questions about J’s blood type and his white blood cell count. We thought it could be leukaemia or lymphoma. Then, they brought in a rheumatologist to check his limbs. Since J’s limbs were warm to the touch, they suspected it could be juvenile arthritis and did an ultrasound to check if his joints were inflamed. As this is an autoimmune disease, J had to do more rounds of blood tests to check if his anti-bodies were overreacting ― a sign of an autoimmune disorder.

After four days in the hospital, J was finally discharged and put on pain-relief meds until the test results came out. During that time, I was frantically googling his symptoms and everything I read pointed to an unknown disorder called juvenile dermatomyositis (JDM) ― a rare and sometimes life-threatening muscle degeneration disease. It’s chronic, there’s no known cure and the treatments sounded harsh and painful. I was hoping that this wasn’t what J had.

Four days later, J’s fever came back. At the same time, we got a call from the hospital to come in and see the doctor immediately. I was freaking out on the inside the entire journey to the hospital because I feared the worse and didn’t know how I was ever going to break the news to my sweet boy. I worried about how he would cope with whatever life was about to throw at him.