The Christianville Spirit: New York State is the Better Choice

The Christianville Spirit
The Spirit that touches Your Life
July 29, 2009-TCS # 158

Ok, My fellow readers. This newsletter, I believe will intrigue you. Why? Well, My Friend, you’re about to find out. Now, let me ask you, when you think of New York, what do you think of? I could probably tell you that you’re thinking of New York City, not as much about New York State. Now, we all know that NYC has Broadway Musicals, Times Square, and the ever-romantic and iconic, Empire State Building. But, what about New York State; Well, the only part of NY State that people think of is the famous Niagara Falls but, the thing is even though Niagara Falls is in New York State when you think of New York, New York CITY comes to mind most of the time. Well, I’m here to tell you that there is much more to New York than New York City. First, there’s the extremely beautiful and scenic Adirondack Mountains and Park. In the Adirondacks, My favorite place, there are many places to see. Like for example, there’s Lake Placid, the site of the Winter Olympics and of course in the winter Lake Placid is a ski Mecca. Now, there’s the Adirondack Scenic Railroad which runs from Lake Placid to Utica and along the way is very beautiful scenery of the mountains. Now, this area isn’t JUST a mountain range, it’s more special. And, I know your thinking, “But, why though?” Well, the mountains here are part of Adirondack Park which is a 6 million acre forest preserve which is said to be kept “forever wild”. For the Sports fanatics, New York State has Cooperstown which is home to the National Baseball Hall of Fame where you can learn the history of Baseball and see the famous stars that made baseball the way it is today. So, you see my fellow readers, there is much more to see than New York City. So, back to my favorite place, So, Can’t you just see me sitting in an Adirondack Chair on the porch of an authentic Adirondack Log Cabin over looking the lake and mountains? I dream of it. All in all, New York State is an awesome State and I Can’t wait to go.

Thanks for reading The Christianville Spirit. Where do you dream of yourself sitting?

The Christianville Spirit: All We Need is Positiveness

The Christianville Spirit
The Spirit that touches Your Life
July 22, 2009- TCS # 157
So, I was watching ABC News with Charles Gibson and talking to My Mom about something, when they mentioned something, to my shock that an unknown donor spent money to put signs up all over the country saying positive things to lift people’s spirits in this economy; and, it actually helps. According to The Closing Bell’s Maria Bartiromo on CNBC says that when positive things are said about the economy, the stock market go up and when bad things are said then, it doesn’t moved at all. In fact, an example of this happened the other day Maria interviewed an economist who had always thought the stock market was doomed said “The worst is behind us now” in the middle of the day. But, the amazing was that by the time the closing bell rang for the stock market it went 263 POINTS! Actually, as far as I know it stands at 8900. But, all in all here, Positive things make the world a lot better.

Thanks for reading The Christianville Spirit. Mr. Unknown donor, if you are reading this now, God Bless You for putting those signs up across the country!

The Christianville Spirit: My Short-Term Memory

The Christianville Spirit
The Spirit that touches Your Life
July 15, 2009-TCS # 156
As you are aware of, there’s a thing that we all deal with at some point of our life, it’s called Short-Term Memory Loss. Most people these days blame 2 factors Age and just plain laziness. But, as I forgot to mention this about the PTLS Conference, funny enough; People with my special needs (or PTLS) have Short-Term Memory problems. You see, they mentioned it at the conference along with many other things and that one, again funny enough I forgot. Now, the only exception to not forgetting something someone said or did is if it’s important to the person with PTLS. Now, My fellow readers don’t get me wrong, I think educating you about myself and special needs is important it’s that there were so many things said but, it’s hard for me to remember a certain amount of things. A thing I actually found out when I was in school is that I could only take 3 instructions at a time. Now, I can tell you that my Long-Time Memory is very good. In fact, I can remember things that people said or did from years back. So, don’t be surprised if your child can remember what you said to them or someone else 7 years ago. All in all, My Long-Term Memory is awesome.

Thanks for reading The Christianville Spirit. Whenever you have Short-Memory Issues, Remember that you still have a lot of Spirit in You!

The Christianville Spirit: The PLTS Union

The Christianville Spirit
The Spirit that touches Your Life
July 8, 2009- TCS # 155
As you all know, last week I talked about The PTLS Conference and PTLS Union. So, I bet that last week you were thinking “What is the PTLS union?” so, this week I’m going to tell what to PTLS Union is. First off, you should know that I think every person has a State and a State Capitol. Like for example Ed’s capitol would be Ed City, Ed; anyway, also a family a nation with the family members being states. But, what is a Union? A Union is group of family nations much like The European Union is a collection of most of the European countries. Now, with a Union, Country, or State; it has to have a capitol. So, the PTLS Union Capitol actually isn’t made up, it’s based in a real city and that city is Houston, TX where I and many other families’ Children where diagnosed. The actual capitol building is where all this is centered which is at Texas Children’s Hospital. Now, there’s more I’ve made up besides the capitol building, a union has to have a president or some kind of government. So, here are the important people of the PTLS Union…
Dr. Potocki and Dr. Lupski are the President of The PLTS Union
Patti Furman(a psychologist at Texas Children’s Hospital) is the Vice-President of the union
Julie Smith-Centeno(My Mom) is the Commissioner and head supporter of The PTLS Union
So, they are the major people that run The PTLS Union. All in all, The PTLS Union is one awesome place.

Thanks for reading The Christianville Spirit. As the years go on the PTLS Union gets bigger. The more, the merrier!

The Christianville Spirit: The Awesome PTLS Conference

The Christianville Spirit
The Spirit that touches Your Life

July 1, 2009- TCS # 154
If you have been reading this newsletter for a long time, then you know that I have special needs, I have what is known as Potocki-Lupski Syndrome (or duplication 17p11.2) anyway, this past weekend was a big milestone for Potocki-Lupski Syndrome and The PTLS Union. You see, on Friday June 26, 2009 was the inaugural PTLS Conference in Houston, TX at Texas Children’s Hospital. Anyway, this conference was awesome because a lot of families showed up to the conference, more than I had expected. In fact, the whole thing was more than I thought it would be. The conference consisted of a whole day of talks from experts about this and of course I got to meet a ton of families; but, I’ll get to that later. Anyway, even I learned new things about Potocki-Lupski Syndrome. Like for instance, there’s a gene in PTLS that protects against cholesterol which I kind of thought was cool and funny. However, (and, this surprised me) that PTLS kids have extra long intestinal tracks which cause them to have constipation. Also, they say that you should keep watch on your PTLS child’s Connective Tissue because apparently this is an issue. The doctors learn a lot from our mouse model that has PTLS. I’m anxious to find out more about the adult mouse because that would help me. Now, the family part of it; There were a lot of families there that were around the world like there’s a family from The Netherlands, two families from England, one from France, and the rest from the United States. But, the thing that I was most surprised by were how many comments I got about this newsletter and I didn’t realize how many people are reading this newsletter. That really makes me very happy. I want all the families for both reading this newsletter and for talking to me. And, if I didn’t get to you and you were there, I’m sorry I didn’t get to talk to you. But, I do want to thank you for at least coming. My Mom and I have waited many years for this conference and I’m glad you got to come and if you didn’t get to come, I can’t wait to meet you sometime soon. All in all, the conference was awesome and a historical day.

Thanks for reading The Christianville Spirit. Thanks to the families and doctors who make the PLTS Union possible.