In summer 2016, a few small rashes began spreading all over Kaia Ettingoff's body.
No matter what cream or ointment her parents, Kate and David, tried, the rashes wouldn't disappear.
After five months of doctors' visits, tests and scans, Kaia was finally diagnosed with a rare and life-threatening condition known as juvenile dermatomyositis.
It's an autoimmune disease triggered by the sun and it means that when Kaia, from Waybe, Pennsylvania, is not in the shade, she can be left covered in rashes.
Kaia Ettingoff, five (left and right), of Wayne, Pennsylvania, began getting rashes all over her body in summer 2016 at age two. She spent five months attending several doctors' visits and undergoing multiple scans and tests
In January 2018, Kaia (pictured) was diagnosed with juvenile dermatomyositis by doctors at Children's Hospital of Philadelphia
Kaia's mother, Kate, told DailyMail.com that her daughter was two years old when the rashes first appeared on her elbows and knees.
'These rashes wouldn't go away,' she said. 'We thought maybe it was eczema.'
In fall 2016, the rashes then spread to Kaia's cheeks and fingers, so her parents started to take her to doctors' visits.
Kate said she read about juvenile dermatomyositis (JDM) after searching on Google, and suspected her daughter had the disease.
But five different doctors told her it was unlikely because it's so rare and that Kaia probably had eczema.
Finally, in January 2017, after being wait-listed for four to five month, her parents made an appointment at Children's Hospital of Philadelphia.
Within a couple of weeks, Kaia was diagnosed with JDM.
JDM is a rare autoimmune disease that occurs in children, and in which the body attacks its own cells and tissues.
It's triggered by the sun and leaves sufferers with skin rashes and muscle inflammation, which causes weak muscles.
JDM is very rare and affects between 3,000 and 5,000 children in the US, according to Johns Hopkins Medicine.
There is no cure for the disease, so treatment consists of medication, and sometimes physical therapy, to control inflammation, reduce pain and improve muscle strength.
'For me, [the diagnosis] was a relief because now we had a name and a treatment plan,' Kate said. 'For my husband, he never thought it could be something that serious.'
JDM is a rare, autoimmune disorder that is triggered by the sun and leaves sufferers with skin rashes and muscle inflammation, which causes weak muscles.
