Know the Signs, Fight for Victory

From the Journal of Owen Gray: 2015 Annual Family Conference

Owen Gray, 14, was diagnosed with Marfan syndrome in the summer of 2014. He was excited about attending his first annual family conference and journaled his thoughts in the days leading up the conference and during it.

August 4, 2015

In just one day I will be leaving for the Marfan family conference in Chicago, Illinois. This will be my first time ever attending the conference. I honestly don’t know what to expect, but I have spoken to dozens of people who have attended conference. Every person that I have been able to talk with says how excited they are and how much they just can’t wait for conference. Hearing all these great things makes me more excited, even though I’ve never attended conference. If I had to choose just one thing to look forward to I guess you could say it is just meeting other people who share the same disorder as me. I just can’t wait to meet others who are just like me! Marfan syndrome is rare, so when a large group of us going through the exact same thing gather together, that must be a special experience. I know this will be an unforgettable experience. Can’t wait to be in Chicago!

August 5, 2015

Today was a great day! My family and I flew from my hometown of Houston to Chicago.

I’ve never been to Chicago, but I know some stuff about the city, like the Sears Tower and Wrigley Field is located here. I also can’t wait to see the “Bean,” which is another famous landmark, some museums, and of course shopping on Michigan Avenue. Nike store here I come!

We didn’t arrive in Chicago from the airport till around 10:00 pm. I was very hungry so I told my dad, “Once we get checked into our hotel we need to get food!” You know how a growing 14 year old growing boy is about eating.

We checked into the Inn of Chicago and then just started walking around in search of a restaurant that may still be open. We found a really good burger place called The Shake Shack. My dad was in contact with some staff and Board members from The Marfan Foundation so Eileen Masciale, Ben Weisman, and Ben’s wife, Lindsay, joined us. It was like a family reunion.

Tomorrow my dad and I have an early morning breakfast meeting with The Marfan Foundation, as we are planning our fundraising walk in February around Marfan Awareness Month. Today was a really great day!

August 6, 2015

Today was my first full day in Chicago. It wasn’t really a busy day, but I did a lot in the time I had. My dad and I started the day by eating breakfast with some staff and friends from The Marfan Foundation to discuss ways we can build community and raise money in Houston.

After that, we met my mom and sister by the hotel. We went to some shops off of Michigan Avenue and walked around till lunch time. Then, we headed towered the Bean because we realized that it was only about a five minute walk from where we were. As we were walking there, we saw the film set of a TV show called “Chicago Fire.” That was a really cool experience!  After taking pictures and walking around Millennium Park, we headed back to the hotel and walked around some shops. By the time we were done shopping, it was time for dinner. We asked some locals where the best place to eat was, and almost all of them said Gino’s East Pizza. So we know we had to go there! 

After dinner we relaxed. I can’t wait till tomorrow to start conference and meet a bunch of new people!

August 7, 2015

Today was such a fun day! I started the day off by going to Northwestern Hospital to check in for conference. Then I hung out with some people from The Marfan Foundation for a little bit while my parents had a volunteer meeting. After their meeting, I went back to the hotel to kill some time because I had a couple of hours till the teen introductory meeting. While I was waiting, someone who I have never met but connected with through Facebook contacted me and wanted to see if I could hang out. That made me excited because I wanted to meet this guy since he’s on the Teen Council and he has Marfan. We just walked around Chicago (including a stop at the Lamborghini and Bentley dealership!). After that I went to the new teen meeting and met all of the people on the Teen Council. We just kind of talked and hung out as friends together. After that, we headed on a bus to Navy Pier for the introductory dinner with all the teens. I met some really cool kids who also have Marfan syndrome. They had some ice breaker games planned, so we played some of those games and it was just fun to just be myself around teens who are just like me. After that, we split off into groups for boys and girls so we could talk about personal stuff that we have to go through. That was an amazing experience — just being able to hear and share stories about things we go through. Tonight was great experience — meeting people who are going through the exact same situations as me and just being able to talk about it. The first night by far blew my expectations that I had for conference! I can’t wait to see what the other days have to offer!

August 8, 2015

Today was easily the best day! During breakfast at Northwestern Hospital with all the other Marfan teens, several different types of doctors from all over the U.S. came and spoke to us. We were able to ask any questions or express concerns that we have with anything on the medical side of the syndrome. After breakfast, we broke off into workshops. The two things I chose were “Questions about Heart Surgery” and “Life after High School.” I learned a lot in both of those workshops. I even got to watch a video of how they perform a valve-sparing aortic surgery, which was really amazing. The heart surgery workshop gave me a lot of peace about having surgery because I was able to hear from people who have already had it, and hear on Lake Michigan. I loved the cruise because the food was amazing (the food is always my favorite part) and the view from the boat was amazing! Then we went to the Bean with the whole group, which was really fun! I took lots of pictures. After that, we got on the bus and went back to the hotel to get ready for a ballet that was happening in the evening. The ballet was very laid back. Austin Carlile (lead singer of the band, Of Mice & Men) shared his amazing story right before the performance, which was a really special moment. We watched the ballet, which was fantastic. Then all the teens hopped back on a bus and went to the teen dance back at the hotel. The dance was so much fun! They had an ice cream bar, pizza, games, and, of course, dancing! It was amazing to just be able to hang out with friends and not worry about anything going on. Then a little bit after we arrived at the dance Austin Carlile and his girlfriend, Pamela, came and hung out with all of us until the dance ended. The dance was probably one of my favorite parts of this whole trip!

August 9, 2015

Today was a sad day because it was the last day of conference, but it was also a really fun day! I started the morning by eating breakfast at the hospital with all of the friends I have made. Once we were done eating, we walked over to the children’s hospital with all the teens. At the children’s hospital, they had a really big room where we could tie dye and make stuffed animals. In another room, they had a really cool game show set up where we could play a trivia game show and win prizes! We all hung out and did those activities for a couple of hours. It was awesome just hanging out with all the teens. After lunch, we all went to the last event together which was the “Living Successfully” panel, followed by a video that showed pictures from things that happened this weekend at the conference. It was really sad to say goodbye to all the amazing friends I made this week, but I know that we will all stay in touch over social media.

My expectations for conference were totally blown out of the water. I came expecting to meet some friends and that was it. I gained a sense of security for all the things I have been worrying about, like my heart and other health issues. All the doctors explained everything so easily which gave me good assurance that, when the time comes for something like aortic surgery, I will be in good hands. Also just hearing everyone’s stories of how they have dealt with Marfan was amazing, because everyone has different issues and problems. It was so cool to see how everyone had a good attitude even though it might be hard sometimes. This was very encouraging for me, considering this was my first conference. I left conference with lots of new friends and a sense of peace about my health. Now, I can’t wait till the conference next year!

Did you go to the annual family conference? What were your favorite parts? Are you planning to attend in 2016?

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Owen Gray, 14, is a ninth grader from Cypress, Texas.

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