The Christianville Spirit
The Spirit that Opens Your Eyes
July 18, 2012-TCS # 308
OK, Everyone, I’m Back! Well, I wasn’t gone that long but, what I’m about to tell you is why I didn’t write My Newsletter last week. You See, As I’ve mentioned many times, I have a rare chromosome duplication on dup.17p11.2. For those who don’t speak “Medicaleez”, that means that a part of my 17th chromosome was duplicated. By the way, a Chromosome is everywhere in your body and the thing that makes up all your features, behaviors, and other things. Anyway, after being diagnosed with dup.17p11.2(now known as Potocki-Lupski Syndrome) at 4 Years Old, it took some time before others were diagnosed. Now about 16 Years Later, Families that had people with PTLS started appearing. Eventually, being 4th in The World became much less lonely. So, 3 Years ago, we had the very first PTLS Conference to teach us veterans, if you will, and those who just got diagnosed, information about Potocki-Lupski Syndrome and all those crazy years of research. So, that brings me to Today. It started as sort of a “We have to have the conference this year, but don’t know when”. Well, the dates that were released were from Thursday of last week to Saturday. So, that was what we did these past couple days, was go to the 2nd PTLS Conference in Houston. By The Way, I should say that in case you don’t know, it was because of the great Dr. Potocki, Dr. Lupski, Pilar and the Lupski Lab Team, that we had it at Texas Children’s Hospital in Houston, Texas. Anyway, The Conference was really wonderful and it was awesome to see old PTLS Family Members and also, meet new ones. So, My Mom and I drove down to Houston on Wednesday to be as My Mom calls, “The Welcoming Committee” for those people who wanted to come early, either to adjust to the time zone or make it a Family Vacation. By The Way, I should mention that there was a Family Member who came all the way from Australia (which is a 22 Hour Difference). On Wednesday Night, we had dinner with a couple family members and then, after dinner, we started meeting new family members that we thought were coming the next day. On Thursday, we got up early and met a couple more family members at Starbucks and then, the rest of the wonderful PTLS Family Members. During the day on Thursday, The “Cool Parents,” The Lu’s took me with them to the Houston Museum of Natural Science and that was the coolest. When we got there, we found out that the museum was bigger than we had thought, it was 4 Floors of stuff to be exact. We had a fun time checking out everything from a Titanic Exhibit, a little Chinese History, and Dinosaurs that had the coolest display! It was a White Background, The Dinosaurs, and Colored Lights below them. This place was big though and it took the whole “Everything’s Bigger in Texas” to a new meaning. I want to say Thank You to The Lu Family (who I’ve appointed my “Museum Buddies”) for taking me and Thanks to the Museum Staff for teaching us new things. Anyway, that night we had a Desert Meet and Greet where we got meet lots of people. So, on Friday & Saturday was the conference itself, luckily though the weather held up for us to walk up and down the street, from the hospital to the hotel. By The Way, the weather was rainy most of the time until it got sunny on Saturday. For the most part, the conference went off without a hitch with the exception of the Fire Alarm going off at the beginning of the conference on Friday and The Mic going on and off. but, then again it was Friday the 13th also and that didn’t help. On Friday Night, after the conference Day 1, we had dinner catered at the Houston Children’s Museum. Again, it took me to hang out with My “Museum Buddies” to show me that in fact, they had opened more of the museum than the last conference. For Reference, The last conference in 2009, opened one area. This Conference, they opened the same area, the down stairs, and an exhibit called “Flow Works” outside. Now, I have to say that although I didn’t spend enough time playing, because it was overstimulating to me to hear too much noise, “Flow Works” was probably the most awesome part of it. On Saturday, we had a more personal approach to the information we heard the day before. We had 3 Options, one was about Behavior, 2nd one was about Feeding and Swallowing, and the 3rd one was the Parental Discussion hosted by My Mom and each one was given an hour each and split into 3 Hours. So, the Behavior and Feeding/Swallowing went all 3 Hours and My Mom’s was during the 1st and 3rd Hour. If I had to choose the best one, I would say the 3rd Hour of My Mom’s Discussion. The reason I say that is because the Feeding/Swallowing and Parent Discussion was on the same floor while the Behavior one was the floor below it and sat next to the Blood Drawing Room. Now, as I said a couple times before, I don’t like the sound of People or Animals in Distress so I had no choice but, to sit in the Swallowing one. And, later on Saturday, us and 2 other PTLS Family Members went on the Metrorail to and from Downtown Houston. and, that was really cool too. One thing I didn’t realize is just how well known, a role model, and how famous, people see me as. Honestly, I know that I’m well-known because I was written in Medical Journals and I’ve been around a long time. but, I didn’t know that to some Families, I might as well be Justin Bieber, Hugh Jackman, or Brad Pitt. In My View, I’m just me, I have the same curiosities and quirks about me that anyone else does, I just happen to have Potocki-Lupski Syndrome and be the representative of what the future might hold for most of the Young PTLS Kids. So, All in all, I would like to thank the PTLS Family Members for coming to the conference (I REALLY hope I got to talk to Every one of You and I know, I didn’t get to talk to everyone as long as I’d hoped; but, hopefully, we can meet sometime in the near future) Thanks to the Staff of both the Houston Museum of Natural Science & Children’s Museum; Dr. Potocki (Duchess Potocki), Dr. Lupski(Lord Lupski), and Pilar (Dame Pilar) for helping set all this up and being a part of this; and, finally, My Mom, for helping putting all this together and a Plus, for being My Mom.
Thanks for Reading The Christianville Spirit. If it wasn’t for having PTLS, I wouldn’t have met so many wonderful from around The World.
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