#MarfanConf - Our First

The Hubby and Grace have Marfan Syndrome.  For us, Marfan Syndrome is part of our regular day to day life.  In the past couple years, we have connected with some great Marfan friends --- our Marf-friends we call them. Via Facebook and blogs and texts, we have shared Marfan experiences and exchanged information.  We have laughed together and cheered each other on during medical tests.  Some of these friends we have met in person and others we knew only online.

Grace and her buddy M from Musingsof a Marfan Mom.

Until this past weekend.

The Marfan Family Conference was in Baltimore and even with the craziness of the Hubby's current health scare, we were there.  And it was amazing.

Grace spent two days with other kids affected by Marfan Syndrome.  She came out of the conference with more confidence about her own issues with Marfan Syndrome and a broader view of  what Marfan Syndrome is and that there is a whole community out there that she belongs to.  Seeing the teens running their own sessions and supporting each other was inspiring and I know that Grace is already looking forward to being part of that group.
Grace and The Hubby on the red carpet at the Marfan Conference.  The Hubby did awesome the whole
 weekend -- just amazing being only 3 weeks post-op from heart surgery and still on IV meds --- so proud of him.

Even Delaney had a great time --- she found herself a baby friend and the two of them just played the weekend away.  I can't wait to see them grow up together at the conferences as years go by.

Marfan Syndrome has been in the news lately because of the diagnosis of an NBA draft pick Isaiah Austin. During the conference he agreed to be the spokesman for the Marfan Foundation along with Ron Williams (CEO of Cash Money Records).  Walking the halls while The Hubby listened to his surgeon Dr Cameron give a presentation, Delaney crawled right over to Isaiah and gave him a big smile.  She just loved him........and looked even smaller next to him.  They were instant buddies.  Grace was pretty thrilled when Isaiah spent time taking pictures and signing autographs for the kids at conference.  He really is a class act --- showing such grace and maturity during this time in his life when he planned on such a different kind of life.

Just being able to talk about the challenges and having an immediate understanding of the issues.  Being able to compare stories and experiences from various surgeries.  And to hear the encouraging research being done around the country on medications made me smile even when talking about cardiac issues in children -- its just so great what they are learning!

Connecting with other affected families was the best part of the entire weekend. We spent hours just standing in the hotel hallways chatting and laughing and learning.  We left Baltimore this weekend with more Marf-friends and more knowledge to make sure that the Hubby and Grace have the best care available.

Next year it's Chicago..........somehow we will get there too.

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