My Family's Story
At age 4, my son fell in love with all things soccer. We spent many hours devoted to his passion – from playing one on one at the park to cheering him on at his soccer games to watching endless hours of YouTube footage of his favorite team, Manchester United. When he was seven years old, he was playing a friendly soccer scrimmage at camp, and another boy stepped on his foot in the exact wrong spot. His foot swelled up, and it never shrunk. That was the beginning of our journey.
We spent the next year jumping from doctor to doctor, trying to determine what was wrong. As with many patients of rare diseases, that year was filled with countless doctors’ appointments, absences from school, misdiagnoses, and poking and prodding of my son as if he were the poor earthworm in a high school biology classroom. As the year progressed, his foot became more swollen. He felt excruciating pain every time it came into contact with anything, every time he ran, and as time went on, even when he walked. Eventually, he began to walk with a limp. Yet he continued to play the sport he loved so much with a smile, even though simply putting on his cleats caused him to shriek out in pain.
Fast forward one year, and we finally got our diagnosis: my son has a fibro-adipose vascular anomaly (FAVA), a disorder first recognized in 2014 and so rare that when our friends Googled it to learn more, instead of finding a Wikipedia definition, they were directed to websites discussing the legume.
Project FAVA's Mission
While FAVA did not manifest itself in my son's case until age seven, it is a condition that is present from birth. Every FAVA patient has a unique journey of discovering, diagnosing, and living with FAVA. Symptoms may present at any age, often spontaneously, and generally worsen over time.
When I was told there is no cure or slam dunk treatments for FAVA, I refused to accept our lack of options. Further, I refused to accept that FAVA would be what stood between my son and his dream of becoming a professional soccer player. When I asked our doctors what I could do as a parent and a layperson to move the needle towards better treatment options, I was told there are three primary areas of need – money for research, lobbying, and locating FAVA patients around the world.
At Project FAVA, we have chosen to begin by conquering the latter. Our primary goals are to:
Establish a central database of FAVA patients;
Establish a central location for disseminating information among our members;
Let our members know of advancements in research and provide them an opportunity to play a role in that research if they so choose; and
Develop and cultivate an active relationship between FAVA patients, the medical community, and researchers.
Join us at Project FAVA in order to build a network, stay informed, and help drive research that will stop this condition from standing in the way of our dreams.
Please click below to learn more about my family's journey and Project FAVA's mission.
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Photo courtesy of Nino Liverani on Unsplash