Brian Colella was diagnosed with FSHD in September 2003, at age 16. At the time, he was an avid athlete who played baseball, soccer, and basketball. Brian also rowed crew, and his team qualified for nationals his sophomore year. Like many boys his age, he had dreams of playing for his hometown Seattle Mariners or competing in the Olympics as his father, Rick ('72 & '76 Olympics, bronze medalist), and aunt, Lynn ('72 Olympics, silver medalist), had before him.
But Brian and his family began to notice that he was
developing odd physical limitations, like being unable to
lift his arm above his shoulder. After seeing a litany of
doctors -- none of whom diagnosed him properly, some even
dismissing his symptoms as growing pains
-- the Colellas
finally received the news of his disease.
In January 2004, I read an article about a woman named
Gina with a condition that was considered rare enough to not
warrant adequate research funding, a condition orphaned by
the customary research funding sources. Seven years ago, she
initiated fund raising efforts to fund research for that
condition. With yearly fundraisers, over seven years, she
raised enough money to alter the course of that condition’s
research. Her efforts, and the efforts of her friends and
family, had made a difference in the progress of the
research for her condition.
In September of 2003, Brian was diagnosed with Facioscapulohumeral Dystrophy, or FSHD. To say that this diagnosis was a shock is an understatement, there are no words to describe how unprepared we were to handle this diagnosis. Brian, our tall 16 year old son, that had hardly ever been sick, had a condition for which there was no treatment, no cure. This was a progressive condition that could rob him of his muscle strength and physical agility.
Brian has always been a special kid; I swear that he tried to make me laugh when he was but six months old. He loves just being alive. He has fun doing just about anything. Brian has always had a special place in his family of three sisters; they all loved him even during trying times amongst the girls. Brian, my son who I love so intensely, I couldn’t sit back and do nothing. I couldn’t just wait . . . .
Someone asked me once, why did I chose such an ambitious undertaking. I chose this path because of Gina. I saw in her story hope for Brian and for others with FSHD. By taking on a fundraising auction and being successful, I feel that there is hope to alter Brian’s future course. I signed the contract with the Hyatt before I had the organization and volunteers. I guess I took a leap of faith that others would care. I believed that others would care about Brian and other people with FSHD that had been long overlooked by research funding agencies.
— Terry Colella, Brian's mother and President of Pacific Northwest Friends of FSH Research