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. Read more
Catherine Lheureux has been living with FSHD for several
years. Her family has been hard hit by the disease; her father and
brothers have all been diagnosed with FSHD. She is a schoolteacher
and a mother of a little boy, Yann. To help his mother, Yann designs
unique greeting cards to help raise money for FSH research.
Read more
All her life,
Colleen Rodrigues was
different than all the other kids. She was always clumsy while they
were graceful. They could dance, she would fall. At age 3,
she started sleeping with my eyes open, and she has never been able to pucker or
whistle. At age 9, her scapulas started winging, making her look like
a bird. People who didn’t know her questioned it. At times it
made her look sickly because she was so thin as well.
Read more
Deena was
about 5 years old when she was diagnosed with FSHD. Her 13
year old younger brother also has it. She has tried many
different vitamins and therapies over the years, but
nothing has really worked.
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