For the first year of his life, Mason Smedley was apparently healthy. A blond-haired boy with bright blue eyes, he was growing into his childhood in a way that seemed normal to his parents. But as he edged closer to a year and a half, they started noticing things that concerned them.
The first thing was a pink rash on Mason's joints. Then he began to get thick, dark circles under his eyes and started to fall down a lot.
At 17 months, a rheumatologist diagnosed Mason with juvenile dermatomyositis (JDM), a form of juvenile myositis (JM) that causes inflammation of muscles, skin and blood vessels. JDM symptoms vary, but typically include skin rashes from mild redness to severe ulcers and can range from minimal muscle weakness and falling when running to difficulty swallowing and vocal changes, according to rheumatology.org.
JM, a group of life-threatening autoimmune conditions, includes JDM and juvenile polymyositis (JP), which usually results in muscle weakness without a rash. JDM is the more common of the two strains. Between 2 and 4 children per million are estimated to develop JM each year, according to data provided by the Cure JM Foundation, the leading nonprofit dedicated to JM research.
When the Smedleys realized their son had a yet incurable disease, feelings of fear and devastation settled in, said Mason's father, Damon Smedley. JDM could affect Mason's organs, could be debilitating, could eventually be fatal — and awareness of the condition was low. Most pediatricians never see a case of JM in their lifetime and the market opportunity is still too small to attract pharmaceutical corporations, Smedley said.
At first, Smedley tried to keep a positive outlook. Statistically, Mason had a good chance of pulling through. But at age 5, Mason took a turn for the worse.
Watching his son's JDM progress, Smedley began to feel helpless.
At the same time, Mason's strength in the face of adversity inspired Smedley. He embarked on a mission to spread awareness of JM to help it get the attention it needed and increase the chances of finding a cure, and to provide support for families of kids with JM.
At age 7, Mason became involved with the Encinitas-based Cure JM Foundation. At the time it was a resource of different doctors, treatments, and connections with people who shared Mason's diagnosis, Smedley said.
On a trip to San Diego for a Cure JM event, Mason became critically ill, in the ICU for more than three weeks while the Smedley family stayed at the city's Ronald McDonald House.
At a San Diego mall during that time, Smedley saw singer and songwriter Jessica Lerner playing a song she wrote called "Miracle." It resonated with Smedley. The next day in the ICU, he played "Miracle" for Mason.
Eventually, Mason pulled through.
In 2009, Mason and Smedley, an Intel employee, organized the first Cure Kids Jam and Festival at Hillsboro Stadium. Lerner headlined, as she has every year since.
In 2012, the Festival outlived Mason. That June, he died from complications due to JDM.
This year, Cure Kids Jam and Festival is morphing with Intel's Great Place to Work team to put on Intel Family Fun Festival from 11 a.m. to 4 p.m. Saturday, July 12, in Hillsboro. Lerner and "The Voice" top 10 finalist Dani Moz will each take a turn on stage, amid a car show, a pinewood derby race, giant inflatables, an auction and a handful of other activities planned by volunteers from Intel's Great Place to Work team.
Proceeds from ticket sales will be split between three charities: Cure JM Foundation, American Cancer Society and Ronald McDonald House. Tickets are $5, and children younger than 5 get in free.