MPS Family Conference 2011

Posted Thursday August 11, 2011 by Melissa

Melissa at 2011 MPS Family Conference

Recently we (and I mean a 7-person collective “we”) attended the 25th MPS Family Conference held in St. Louis, Missouri. Hopefully, we got to meet many of you there. I was also humbled enough to get to speak about the ups and downs of being involved in a clinical trial. Since I only spoke for 15 minutes, hopefully I didn’t bore anyone to tears or REM sleep. I was asked by several people to post the presentation and it is below; also, the entire conference materials and videos will be posted on the National MPS Society website soon.

Melissa at 2011 MPS Family ConferenceI find that the annual conference is such a unique aspect of our MPS/ML community. Although for most of the year, we long for an island or other communal living where we can all accept each other’s kids, trade respite and infusion care, provide physical shoulders to cry on, and share and trade equipment, these few short days are the drink in an often too long drought of geographically close MPS families. I often wonder that if we didn’t live so far, would we treasure these days as much?

Meeting and reuniting with other families, to me, is among the top (if not the top) highlight of the conference. But it is also difficult to weigh it against the access we have there to top doctors who specialize in caring for children like ours. And special doctors they are, who revel in the complexities and fascinations of MPS and ML, but who can also see the twinkle in little eyes that many outsiders just gloss over.

The conference also celebrates and embraces the uniqueness of each of our children. Although they may share many characteristics, symptoms, surgeries, and equipment, they are each a sweet soul unto themselves. Discovering and enjoying each child’s special qualities is my selfish activity at the conference. They are all so, so special. No one is phased by hyperactivity, the escape artists, the potty accidents, the chewing, the errant screams and wails, the flailing, the hitting, the tube feeding, the gait belts, the wheelchairs, and all that can accompany our lives. Stares are those of love and inquiry – “Now, are we friends on Facebook? Isn’t that ____?” – when you know the child’s  picture better than the parent.

I’ve insisted to my husband that we will never miss a conference. This was our third one – every year since Case was diagnosed. Now, I know that life happens, but as that last night of sharing and commiserating winds down, I always feel like I’ll fight to the death to make sure we go every year. I miss you all already.

My presentation, if you missed it:
A little note is that while the slides are lighthearted, some of what I shared verbally was not. For example, on #7, doing taxes in a hospital room – those photos represent all the things missed while being involved in the trial – birthdays, graduations, baseball games, and the like. Almost all of those photos were texted to me during the missed event. I also shared about how being in a trial teaches you more about fighting for your child and what they need, about how to learn more about the disease from the doctors and nurses who see many of these kids, and about what you can live without (and what you absolutely must have … video players, baby gates, and dry shampoo).

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3 Responses to “MPS Family Conference 2011”

  1. Thank you – so much miss these conferences or never get a chance mostly due to high cost and finances that reading these posts can mean alot. I used to say I would never miss a confernce either but unfortunately it wasnt realistic (your situation is different) being an adult there isnt as much support and isnt as much talks tailored to our learning that often we as affected adults feel like a separate entity not by families like yours but by organizers and I wish in so many ways there would be a broader realization that babies, children, teens, adults who are affected all want the same thing – different reasons but we allw want the same thing perhaps in different ways. (to be with others who experience what we live, to learn from others who have what we do, and to learn from drs who might be studying what we have.) I dont mean to sound negative but there just hasnt been much realization yet that affected adults are not a big part of the ‘goals’ for these conferences and the realizations that adults can learn from kids who are affected and kids can learn from adults who are affected. I always hope someday it is families like yours who help turn this tide – even though Case is young you seem to get that we all learn from each other, young or old, no matter the finances and no matter the background MPS does not differentiate! 🙂
    Thanks for all you do Melissa,


  2. Hi Melissa,

    I borrowed your Swindoll quote from your presentation for a post on my blog. It fit in nicely with what I have been thinking about lately. Hope that is ok!


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