My family and I used to manage a greeting cards and gifts company to raise awareness for my rare disease, Fibrodysplasia Ossificans Progressiva (FOP). My life revolved around planning my new card designs, watching my dad scan, print, and prepare the cards, and helping my mom package and label our products for the various craft fairs we attended each year. As stressful as it was, the decision to close the business in 2010 (after 10 years) was a difficult one to make. Even though I hadn’t always enjoyed every aspect of keeping up with a business, I missed having that type of lifestyle when it was over. I eventually stopped drawing and never seemed to be able to “find the time” to pick it up as a pastime.
…Until now. About a week ago, I was looking up one of my mom’s poems on my old website and noticed that the centered text somewhat formed the shape of a vase. That was all it took to inspire the artist in me; I immediately had a vision of what I wanted to create in honor of today’s FOP Awareness Day.
My mom wrote Always Have Hope a year or so after my FOP diagnosis in 1999:
When you struggle for answers,
and are trying to cope,
Believe in your heart…
Always have Hope!
Hope takes you further, is ready to go,
Hope holds the vision,when others say no.
Hope is the river,strong, full and deep
Hope knows no limits, no mountain too steep
Hope for a treatment, hope for a cure,
Believe in a miracle, holy and pure.
Hope hangs on, believes in the best
Hope is a journey, each minute a test.
When your spirit is weakened
and you’re trying to cope,
Believe in your heart..
Always have hope!
The words to this particular poem have been a part of my life ever since I was able to fully comprehend them. They’ve been beside me through every obstacle, encouraging me to remain hopeful and keep the faith. We’ve had a framed copy in every Connecticut house we’ve lived in, and we’d sell wallet-sized versions when we brought our products to craft fairs. My mom has told me that the sentences simply “came to her,” but I can’t imagine how difficult they must have been to actually live by. It inspires me that she found the strength within herself to write with such grace and eloquence after my unfathomable diagnosis.
Ten years ago today, April 23, 2006, the discovery of the ACVR1 gene mutation that causes FOP was announced to the public. It was a huge research breakthrough for all the scientists at the University of Pennsylvania School of Medicine who had been working tirelessly for years. The gene discovery announcement brought an incredible amount of hope to our entire community: the 800 people worldwide currently diagnosed with this disabling condition, our families and close friends, and all of the amazing people devoting their lives to finding a cure.
The researchers have made a lot of progress since the discovery and are now working to hopefully administer a drug, palovarotene, as a new treatment to prevent new bone growth in both adults and children with FOP. We’ve come a long way!
Hope for a treatment, hope for a cure... Always have hope.