Michael Warechowski IV

Updates on our sweet Michael

MLD Conference

on August 6, 2013

Mike, Michael and I spent this past weekend in Parsippany, NJ for the annual MLD Family Conference.

We left Thursday on a morning flight. Michael was pretty uncomfortable as soon as we got on the plane and even cried a little. But as soon as we got up in the air and were able to recline his seat, he was more comfortable and fairly quiet for the rest of the flight. As soon as we got in and got our rental car we went to my best MLD friend’s house to meet her, her husband and two boys who have the juvenile form of MLD. We had such a great time hanging out with them. We played with the boys, ate some real Italian food and just enjoyed each other’s company. It’s amazing how close you can get to someone even if you’ve never met. I miss my friend now that I’m home.

The conference was good. Very emotional but very good. There were over a hundred people there, 17 of which were affected with MLD – most had the late-infantile form but there were a few with juvenile MLD and I even met 4 adults with MLD. During the presentations, there was a respite room across the hall with wonderful volunteers to keep a close and caring eye on our MLD loved ones. They did all sorts of activities including arts and crafts, live folk music and story time. We were free to come and go as we needed for meds, diaper changes or just to check-in. I felt completely comfortable leaving Michael in there.  I learned a little from the presentations at the conference (I must say that after a year and a half of living with MLD and a lot of research, I’m pretty educated) but where I really got some education was from the other parents. One in particular lost her son recently and she was a wealth of knowledge. She also came with lot’s of equipment to give away so we came home with a back brace to help Michael’s scoliosis, a vest for his airway clearance machine, and a few other small things. 

I think Michael had a great time and he did great on the way home. The picture of him is at the airport before we left to come home. He’s saying, “I do NOT want to get on that plane!” LOL. It was a very exhausting weekend, both physically and emotionally so when we got home on Sunday, my sweet husband let me go to bed at 8:00pm that night and sleep until 7:00am the next morning. 

I’m also glad to be home but wish I had gotten a little more time with my MLD friends. I’m already looking forward to next year’s conference. I’m going to suggest that they have it in Atlanta next year (wink, wink).Image


One response to “MLD Conference

  1. Shon says:

    Thank you for the update. I pray for Michael, for his peace and comfort, quite often. I also pray for your family.

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