Sona's Story

Sona!Sona is a bright, active and hilarious third grader. She's a voracious reader and writer, a painter and a sometimes-reluctant pianist. Her current passion is interior decorating, apparently inspired by her parents' inabilities in that area. She really enjoys playdates with her friends, keeping her little brother Taj in line, and helping-out her guinea pig Pickles.

Sona was diagnosed with FOP in the fall of 2013 after her first major flare. That flare locked her back and left her unable to lift her arms above her head. She’s adapted to these limitations with incredible grace, determination, and good humor.  Since then Sona’s had many more flares and added a lot of bone, but thankfully has not yet lost much more movement.  She really misses gymnastics, going down slides, and playing soccer but still loves to swim, run and express her fashion sense.

In 2016 Sona became the youngest participant in the first ever clinical trial for an FOP treatment, giving her own blood, sweat and yes some tears in the race to find a drug that will help stop FOP.

Every day counts for Sona. Every day that goes by without a treatment means the disease continues its terrible progression, sometimes slowly, sometimes quickly. Every day we get closer to a treatment means Sona is less likely to face a life imprisoned by her own bones. 

Every day and every dollar counts. Please help us fund crucial research on FOP!