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
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