Monthly Archives: April 2016

Hope for a Cure

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.

AlwaysHaveHope-poem-FOP2016-cropped

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.


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Airplanes & Independence

Growing up with a physical disability made me feel as though I wasn’t capable of doing anything without some type of assistance or accommodations. I couldn’t participate in various activities (events, games, sports, etc.) or reach the same milestones (driving, working, college away from home, traveling abroad, etc.). I wanted to experience that same type of independence, but didn’t know if it would ever be possible.

Without really meaning to, I discovered that flying by myself is something I’m actually very capable of. It’s the closest to being independent I’ve ever felt… even though I still have to reach out to strangers for help. Traveling gives me an overwhelming sense of freedom that I hadn’t ever experienced before.

My first solo flight was for my 19th birthday (2012) to visit my best friend in Florida. It was also my longest time away from home, so I had even more of a range of emotions. I was excited to be on this new adventure but very nervous and fearful. My physical limitations intimidated me and the thought of not having anyone familiar around to help me get through the travel day made me anxious.

Any doubts and fears I may have had about not being able to handle this Southwest Airlines flight disappeared after meeting the friendly woman who sat next to me. I was surprised that she sat in my row when she could’ve chosen any other seat on the empty plane (Southwest doesn’t provide assigned seating), but later learned it was a flight attendant’s thoughtful suggestion. We introduced ourselves and chatted briefly about our destinations, as strangers on planes sometimes do. She then noticed that I had limited mobility and couldn’t reach for my carry-on bag from the floor. I was relieved that I didn’t have to awkwardly ask for help; she just seemed to understand.

My new friend explained that she’s been living with a condition known as Reflex Sympathetic Dystrophy (RSD) ever since being assaulted by one of her students. She lost the use of her right arm and hand from this incident, so she did understand what it was like to not have full range of motion. I was happy to be able to open a package of food for her, something she often struggles with because of her own restrictions. We continued getting to know each other and noticed more personal similarities such as chronic pain and our love for Paul Newman. After chatting for the majority of the three hour flight, we exchanged contact information and have been Facebook friends ever since!

Flying has given me the opportunity to figure out who I am outside of the comfort of my home and familiar circles of friends. It was the missing puzzle piece in my effort to become as independent as possible, especially as a wary teenager. Though my independence will always be dependent on other people, I’ve found so much courage in needing to reach out and ask for help. I’ve learned a lot about myself, the kindness of strangers, and how to handle a variety of situations. The solo flights I’ve taken since my first one have strengthened my love of flying even more, and I’m always looking forward to when I’m able to do it all again.


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