This Saturday, many families will travel to a church in Hillard, Ohio. Very few go to this church. We didn’t go to the same college. We don’t root for the same sports team. But we will all wear purple. All of our families are affected by MPS. Some of our children are young. Some have progressed further in age, and in the disease. Some have already lost their precious child. But still they come.
When your child is diagnosed with MPS, at some point you start to make friends with other MPS parents. You get friended on Facebook, you follow them on Twitter, you read their blogs (does anyone read ours?), but it takes awhile to realize that these MPS friends will become your friends … friends. We hope for a long life, for us and our children, and especially our MPS child or children, so at some point you realize that these MPS friends will be your friends …all…of…your…life.
It is an incredibly comforting thought to have friends who fully and deeply understand the joy and pain all rolled into one that MPS brings to your life.
We have been incredibly blessed through this clinical trial process to get to spend LOTS of quality time with other MPS families. Some are in the clinical trial, some are screening for the trial, some are coming in for appointments, some live in the area, and some, unfortunately, are at the hospital for more critical procedures. I can’t count the hospital meet-ups, hotel cook-outs, hotel pizza parties (including a Super Bowl party thrown in there), and short-stay unit late nights that have happened in the last 9 months since Case began screening for the trial.
We’ve also met wonderful families at the hospital, MPS family conferences, and online. And even those “online” friends are often soon just called “friends” even though you’ve never laid eyes on them.
My point is that having other families to call, relax with, brainstorm with, and cry with, is incredibly important in this MPS life, or otherwise known as LIFE. If you have MPS/ML or a child with MPS/ML and you aren’t already planning to attend the MPS Family Conference later this month (July 2011) in St. Louis, you should consider it. Also, if you are a newly diagnosed family, I had heard that there still might be some scholarships available if you call the National MPS Society.
We have attended each conference (Disney and LA) since Case was diagnosed and I can’t imagine missing one. The medical updates, access to the top physicians, and the quality time with other families is an amazing experience. Hope to see you there!
In the meantime, I thought I’d show some wonderful pictures and video of our times with other MPS families, both in North Carolina and at previous conferences and fundraisers.
This video is from a wonderful visit at our hotel in North Carolina with the Muller family and their sons Riley (MPS II) and Donovan.
Meeting with friends at our UNC clinical trial visits
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Friends met at conferences, fundraisers, and other get togethers
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