On October 1st, 2013, I was diagnosed with FA; my family and I knew nothing about what it meant. This year will be the 5th year anniversary of my diagnosis, and I've been reflecting on how much I've learned.
I'm going to share specifically about my rideATAXIA experience. A year went by after being diagnosed, before my family and I went to see Dr. Lynch and his team at Children's Hospital of Philadelphia (CHOP). During our meeting with him, he told us about 2 major events in Philadelphia: The CHOP FA Symposium and rideATAXIA and their stories. He mentioned that we were too late for registration for that year and should try and plan to go next fall!
So the weekend of October 10, 2015, came around, my mom and I were registered for the ride and the symposium. We got to the hotel, booked in and went downstairs to the lobby where a few tables were set up; this was where registration/pick up for the ride was, at this moment I will be honest I was scared and nervous to go over, so my mom and I talked for a few minutes about why we were there. We were there to meet other families, individuals with FA, to hear what everyone goes through and to see if stories, situations and life habits were relatable.
However what was to come was beyond what we were expecting, as we approached the table; everyone could tell we were a new family coming to the events, we were welcomed by hugs and hellos from everyone. The area was one of the most welcoming areas I have ever been. That's when we were introduced to the term: FAmily, which simply puts FA and Family together.
During this moment, my mom and I knew that we were in an amazing and special place surrounded by love, support, and strength. That evening we met so many FA'ers as we're called and some of their families! One family who pulled us in like we had known them for years; which FAmily makes you feel anyway, was the Holliday Family. The click that my mom, Marcia Loomis had with Sarelle Holliday was instant; it was like the two were sisters and had not seen each other for a long time. Sarelle and her husband Neil took my mom under their wing and talked and comforted her throughout the weekend. Katelyn and Alyx are their children, and I instantly clicked with both of them like we were siblings. Alyx is a year younger than me, and he is also a FARA Ambassador.
October 11, 2015, everyone went on the ride, which for those who have never been it's an absolutely amazing event. My team; Team Head, has ridden the past few years and will once again be riding. I choose to ride the 4-mile course on my trike, I've been tempted to ride more but the 4 miles keeps me from over exuding myself because the FA kicks in sometimes out on the course it likes to drain your energy level. I push through it though, I love riding especially in this event because I'm a very social and friendly person who enjoys meeting new people and families every year and luckily the ride does that! rideATAXIA brings together everyone and anyone whose life has been affected by FA, with that, said it has made me feel accepted and has taught me that I'm not alone, which has helped beyond words can describe.
So now that registration is open for rideATAXIA; October 14th, 2018, just remember this: This memorable weekend of riding, meeting people, laughing, hugging, eating a huge lunch and creating memories is full of FAmily, doctors, loved ones, friends, supporters and we love you all and will always be there for you.