Our journey began in the summer of 2008 with innocuous raised bumps on then 3 year old Shona's knuckles. We went to our pediatrician, expecting to be sent home with some ointment, but instead we left with a diagnosis of Juvenile Myositis (JM), a rare, life-threatening, autoimmune disease in which the body's immune system attacks its own cells, blood vessels, and muscles.
In the intervening 3 years, Shona has endured more than any child should. At her worst, Shona was having difficulty swallowing and could not lift her head off a pillow.
Fortunately, disease outcomes have come a long way since the days of 30% mortality just a generation ago, but treatment side effects are both physically and emotionally challenging. As one doctor told us early on, "You are between a rock and a hard place. No one wants to give these drugs to children, but there is no alternative." Even worse, disease flares can be set off with infection and UV exposure.
Having made it through 2 flares since diagnosis, Shona is - at the moment - doing well.
On June 24th, Rishi will be running the Seattle marathon on behalf of the Cure JM Foundation, a nonprofit which we serve as board members. If you would like to support Shona and our family on our path to a cure please sponsor his run by clicking on the green Donate button on this page.
We appreciate everything you already have done for us on this journey, from voting for the Pepsi Refresh grant last summer, to bringing meals over when things were at their worst, to donating generously last time we ran for Cure JM on Valentine's Day 2010.
We hope we can count on your continued support on our long journey ahead!
Rishi and Mitali