Musings of a Marfan Mom

Conference Recap

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Before I give you the rundown on conference, I’d like to take a moment to summarize my thoughts on this year’s experience. I enjoy working with youth: specifically, teenagers. I’ve done it a lot, from research to being a counselor at Especially for Youth (a weeklong summer camp put on by my church). I can honestly say that in all my years of working with teens, I have never worked with a better group than the one at the Marfan conference. Everyone treated each other with respect. I never had a participant back-talk me or another adult during the weekend. On the contrary, they frequently expressed gratitude for the effort they knew went in to planning the conference. I saw no social hierarchy. All the teens were friendly and encouraging to one another, no matter their age (and we had a big range: 12-19), race, or physical appearance. Maybe it’s just because I’m a mom now, but I got emotional just watching them interact. It was beautiful.

Sat. night a family from another country came to see me and I took them to meet some of the teens. It was the first time the son had ever met another person that looked like him. The father looked around at the teens in wonder and asked me “How many years have these kids known each other?” He was shocked when I told him “only about 24 hours. 70% of the teens have never been to conference before.” That’s how quick and complete the bond is. I feel really humbled that they are willing to open up and let me be a part of that.

Thursday night I’d made plans to have dinner with a few friends, which quickly turned into a dinner for 16 + Menininho. When I walked into the hotel to let people know we’d arrived, I was greeted with “Where’s Menininho?” No sooner had I said “in the car” than the van was swarmed by a group of teens clamoring to get him out and into his stroller. Dinner was great. I hadn’t seen anyone for over a year and it was the first time I got to meet my friend Debbie and her family in person (we’ve chatted online almost every day for the past 3 months). That night I hung out with the teens a little bit before going to bed early (12:30).

Friday morning I had leadership training seminars until lunch. After eating with Mark in the underground city below our hotel I met up with a few teens to finish the memory boxes for Dylan and Erin’s families (just realized I never took pictures of them. Darn!) and prep for officially kicking off the weekend. I can’t think of a better way to get things started than by having Rick Guidotti from Positive Exposure come to speak. Rick used to be a high fashion photographer and left the field to create this organization in 1997. He saw that medical textbooks tend to dehumanize patients with rare genetic disorders. Positive Exposure works with medical professionals to show them the people behind the illnesses. Rick also does workshops for youth with genetic disorders, to help them see the beauty in themselves. This year he sponsored a photography contest for the teens. Any kids without cameras were given a digital disposable camera and all were charged with taking pictures that best demonstrated Marfan beauty. Once we determine a winner, I’ll be sure to post a link to the picture!

My friend Marsha was in charge of planning the conference Welcome Event. It was state fair themed and had all kinds of fair type games for the young kids. For the teens? Well, that’s where Ben, Steve, Jonathan, and I came in. We were recruited to be the faces behind the pie-in-the-face game. As you could see from the picture I posted as a teaser, I came prepared. Ben (my partner in teen programming crime) and Jonathan (head of health education at the NMF) were by far the favorite targets…I guess Steve and I were just too sweet! The pies were just whipped cream in a tin till the end, and then our respective spouses/friends got us with REAL pies! I’d picked chocolate….mmmmm!

We follow generally the same schedule year to year, and Friday night is one of my favorite parts of conference. After we’d had a chance to clean up from the pies, we held the Living Successfully workshop. Ben, myself, and 2 older adults shared our stories and then we opened the floor for discussion. After that, we broke up by gender in different rooms to allow for free discussion on anything. What is said in those rooms stays in those rooms.

Saturday morning was breakfast with Dr. Dietz. For those of you who don’t know have the pleasure of knowing him, Hal Dietz is: 1) an angel, 2) the man who discovered the mutation that causes Marfan, 3) the man who co-discovered the related disorder Loeys-Dietz syndrome, 4) a cardiologist by training but a self-taught geneticist, 5) one of the nicest, most human doctors I have ever had the pleasure of meeting. Every year he sets aside an hour and a half of his insanely busy schedule to spend with the teens just answering any questions they come up with. Ben has to drag him out of there at the end because Dr. Dietz doesn’t want to leave till all the teens’ questions are answered, even if that means being late for other meetings. Like I said, one of the nicest doctors ever.

Next was the hardest part of the weekend: the Coping With Loss workshop. The crappiest part of Marfan is that kids have to get used to loss early. I have lost 10 Marf friends thus far. This fall we lost 2 of our beloved teens, like I’ve mentioned before, and those deaths were the first for most of the teens. I hate it. I hate it I hate it I hate it. I hate that these teens have to get used to death in that way so early. However, since we have to deal with the reality that we’re going to lose friends to this illness, I’m glad we have the foundation. We were lucky enough to have two social workers who also have Marfan run this workshop and I think in the end it was really healing for everyone.

Saturday afternoon we chartered two busses and drove all the teens into Wisconsin for a boat ride on the Mississippi River. SO. MUCH. FUN. After everyone was settled and we’d had a little pizza, I got the party started with a little dancing and pretty soon everyone was getting down! Taylor Swift’s music was a big hit and I was pleasantly surprised to see that so many guys knew the lyrics to Love Story. We ended up being on board longer than anticipated because the bridge that had opened up to let us go down the river got jammed, and we couldn’t get back until technicians had re-opened it. My favorite pictures from the weekend are from this field trip.




Sat. night dinner was at a fun Italian restaurant, followed by a dance (the DJ even had Marfan!). Some of the kids hit up the pool for a while. We called an end to official activities around 11:30 PM. The teens retreated to a hotel room (I think most nights they were together till 2 AM) and us adults went to the hotel restaurant for “grown-up time.”


Sunday came all too soon! After breakfast, the teens convened for a workshop on being our own advocates, taught by long-time NMF volunteer Chris Heany. I cannot stress this subject enough! Patient advocacy is basically what I got my Masters in. Whether you have a chronic illness or not, know how to talk with your doctor and your child’s school to get what you need! Afterwards the teens had the opportunity to write notes to Dylan and Erin’s families and put those in the memory boxes we’d made and then play games and hang out with each other.

We got back together with the parents for the final luncheon and close to the conference. Awards were given out and then it was time for the Living Successfully Panel. 5 of us spoke. I was so proud of Laurel, not only for speaking but because she also received the Rising Star award (by 14 she’s now received the 2 highest awards a young adult can get!). I was the last speaker on the panel, and then all of a sudden it was time for the final slideshow and that was that. Conference was over.

Every year I think conference gets better and better. I’m already looking forward to when Menininho will be a participant in the teen program (with other people running it, of course!). I was grateful for the love and acceptance that my Marfamily showed him. I hope that as the years go by we’ll see lots more Marf babies like him.

CAN’T WAIT FOR HOUSTON!!!!

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7 Comments

  1. Maya-
    You are a true angel and the teens (and I) am so lucky to have you. Thank you for summarizing the weekend so beautifully- what a wonderful conf. this was! Here's to a fabulous 2010 in midely warm :) Houston, TX!

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  2. Oh! and I also wanted to mention how much I LOVED your speech…you did a wonderful job!

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  3. What an incredible conference!! I am so glad you were able to be apart of something so memorable! The chocolate and whipped cream look is stunning!

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  4. Glad you had such a good time! Thanks for taking the time to post your story. :)

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  5. i have a 9 year old daughter with marfan, we happen to find this website, and it excited her to see young people like her . i think your page is great!!

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  6. Hello! I am a mental health therapist beginning to work with a 15yoa female w/marfan. I don’t believe she has ever been in contact with another person who has marfan other than her father and younger brother. She is desperate for a friend and is the target of terrible bullying/teasing in school. I would love to find her a summer camp to attend to learn she “isn’t the only one”. I have looked on the NMF site. Any suggestions?

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    marfmom Reply:

    Yes, I will send you an email later today :)

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