Monthly Archives: January 2016

To My Camp Counselors

Me (age 7) & Paul Newman. He was one of the greatest actors of our time (Butch Cassidy, Doc Hudson from Cars, etc…), as well as an extremely kind and generous soul. If you haven’t seen his acting, you’re probably familiar with his Newman’s Own products! He also founded THITWGC in 1988.

I feel very fortunate to have grown up less than 10 minutes away from an organization that has remained close to my heart: Paul Newman’s The Hole in the Wall Gang Camp (THITWGC) in Ashford, Connecticut. It gave me all that I needed to thrive as a young girl with a life-threatening condition. Camp subsequently changed my life without me even fully realizing it until years later. All I knew as a camper was that I wasn’t alone in our newly-moved-to state of Connecticut; there were other kids who were dealing with their own medical challenges. I related to them more than I related to anyone my age who lived near me.

This summer camp provides “a different kind of healing” to children who have been diagnosed with a serious medical condition. They spend a week in a color themed cabin (Red, Yellow, Green, Blue, or Purple) with other campers their age and are able to finally enjoy a sense of freedom in spite of their illness. There’s an all-inclusive swimming pool, Arts & Crafts and Woodshop, Sports & Rec, Theater, and so much more.

The counselors (individually assigned to each cabin and unit color) were a huge part of what made this camp so magical for me as a camper. If you knew me back then (already 15+ years ago!), this post is dedicated to you. I wish I could thank every single one of you individually but these words will have to suffice.

1917622_386535423596_5112408_nThank you for…

1) Encouraging me to try new things, like performing on stage, riding a horse (for the first time) through a scavenger hunt nature trail, seeing the view of Camp from atop the 40-foot climbing tower, and participating in icebreaker games.

2) Spending time with me in the Olympic-sized pool (while saving bugs from drowning), and assisting me in the deep end because I was unable to take the swim test.

3) The countless bracelets that we beaded together, mugs we painted, wood plaques you helped me carve, t-shirts that were screen printed, and so many other random projects.

4) The hours you spent with me in the infirmary when I wasn’t feeling well. You waited with me while I rested and then walked with me to the theater to watch the latest Disney film.

5) Understanding why I didn’t always want to dance in the dining hall after mealtimes. Instead, you stayed with me at our cabin’s table singing songs out of the songbooks or ones we had memorized.

6) Not allowing me to go home my first year as a camper even though I asked every single day. You always said there was something to look forward to that I wouldn’t want to miss… but truthfully, you really just knew that camp was the best place for me at that time.

7) Appreciating my quietness and complementing me with your bolder personality.

1919160_180459863596_3267806_n8) Supporting my childhood love of Beanie Babies… and still associating me with them today.

9) Helping me discover my passion for photography.

10) Reassuring my parents that I’d be fine without them for a week.

You helped make my childhood memorable and bright despite my rare disease and serious physical limitations. There were a lot of “regular kid” things I missed out on, but Camp made up for pretty much everything. I felt included and accepted for the first time, and, of course, safe, respected, and loved.

Camp gave me the childhood that I wouldn’t have had otherwise.

Thank you for contributing to it.


In memory of Paul Newman, the reason for it all, and in honor of his would-be 91st birthday.
You’re forever missed.


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How Flare-ups Affect Me

Living in a body with FOP is like being forced to ride a completely different roller coaster every day with no time in between to catch your breath. I never know when the next drop (unexpected flare-up) might be, if I’ll stop going in loops (seemingly never-ending pain), or if it’ll be a smoother ride for a while. At the end of each day I’m often physically exhausted from just trying to survive. A more active season of FOP brings an additional level of uncertainty and a fear of possibly losing mobility once a flare-up subsides.

There’s no explanation for the spontaneity of progression, only what it’s doing to my body: growing new bone where it doesn’t belong (my muscles and connective tissues). My most recent flare-ups, primarily my left hip, lasted for five long months. The majority of these months were spent on the couch or in my bed, alternating between ice and heat for minor relief and being frustrated when the pain medication I had didn’t take the edge off.

My hip flare-up eventually abated, but I immediately noticed a change in both my posture and my gait. I’m now unable to stand with both feet together unless I bend my left knee, and I have a slightly more noticeable limp. I also can feel the extra bone that formed over my hip joint and hamstring muscles. Being able to physically see and feel how FOP has affected my body is disheartening and difficult to come to terms with. I always seem to be grieving the mobility I’ve lost, as well as for the future. FOP never ends even if it decides to randomly take a hiatus.

I still have sporadic pain and need to take breaks during the day to rest, but the higher intensity flare-ups have quieted down for now. I’m enjoying being able to do various things that I’ve missed, like making my own meals, washing the dishes, working at my computer, and getting together with friends. I’m trying to take it one day at a time because I don’t know when the pain will return. It could be a day, week, month, or several years before another serious flare-up. Since FOP is out of my control, all I can really do is pray for strength to make it through the debilitating pain and roller coaster-like drops.

January 2016


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2015 Highlights

Happy New Year!! These were some of my favorite days of 2015.

1. June 13th – mini photo op with my Boston-area friends before we watched our favorite music duo, Karmin, open for Lindsey Stirling! So many laughs, photos, and inside jokes.

2. September 8th – had a good day where I felt more like myself following so many weeks of debilitating pain and discomfort. This was also shortly after a huge FOP research breakthrough! (Read about it here)

3. January 16th – meet & greet after the Danny Gokey concert (he was on American Idol season 8 and is now a Christian artist). This was one of the very few winter days where I was able to get out of the house and not get sick afterwards. Days like these help me feel relatively “normal.”

4. December 30th – reconnected with my best friend of approximately 17 years (since kindergarten). Like always, it felt like no time had passed!

5. June 22nd – spoke at the Travelers Championship PGA Tournament in Cromwell, CT! I had the incredible honor to share a little about FOP as well as my experiences at Paul Newman’s Hole in the Wall Gang Camp in Ashford, CT.

6. March 10th – reunited with one of my childhood friends and her friend to see Matthew West, Colton Dixon (American Idol season 11), and Mr. Talkbox in concert. We were able to get VIP seating with a meet & greet after the show, so it was a pretty great night!

7. March 20th – Next Step’s block party benefit in Cambridge, Massachusetts! Caught up with some of my favorite people and met amazing donors who support this nonprofit.

8. October 10th – spent part of the day at the San Diego Zoo during my trip to California!

9. July 25th – Taylor Swift concerts are an all-day adventure. It was an incredible day, though, and I’m thankful to have spent it with one of my best friends!

10. July 20th – Next Step’s annual Face Forward conference in Ashland, Massachusetts. It was a great four days getting to know other young adults with rare genetic diseases!

11. December 25th – I decided it was a priority to (try to) get some Christmas Day selfies with my cat, Prancer, of course. :)

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