The Christianville Spirit
The Spirit that Uplifts Your Soul
March (Marzo) 5, 2014-TCS # 392
So, As You all know (or Should Know), March or “Marzo” as I like to call it, Is known as Potocki-Lupski Syndrome Awareness Month and March 8th is PTLS Awareness Day. So, What is PTLS? To give you a brief history of it, PTLS was named after Dr. Potocki and Dr. Lupski in Houston, TX. I was diagnosed with it when I was 3 Years Old and at that time, It was a called “A Duplication of Chromosome 17p11.2.” on March 8, 2007, Dr. Potocki and Dr. Lupski had it named after them. I only found out last year that exact date of it. You See, I can tell you that exact story of how I found out but, I didn’t know the exact date that it was Named. So, in honor of PTLS Month and PTLS Day, coming This Saturday, I’m going to tell you about How I found out the date, The Story of That Day, and Rewrite The Newsletter I had written that day which First Mentioned It. So, without further a due, This is The Story of PTLS Awareness Day. Happy PTLS Day to All!
So, One Evening, I was curious and was wanting to know about when PTLS, The Name, was first mentioned, after digging through Years of My Printed Newsletter Records, I call them “My Records” for short. Thank You, Grandma Honey for Printing Them :) I read through them all the way back until March 8 of 2007. The First Time I mentioned it (and, I will show you, how I did) I had No Idea how to even spell “Potocki and Lupski”, it is a hard name to spell with such a Literal Mind that I have. As for the Day itself, I remember it quite clearly (although In My Head, At the time, I sort of over looked it). I was going to Senior High School (they have a different structure of Schooling her in Plano) It was My Final Year of High School. Because of a Screw up of My Class Schedule (They put “Job Site” near the end of The Day), So My Mom had to pick me up early because I didn’t have any classes, only the “Job Site”. Anyway, I remember us pulling out onto The Street and as We started driving up The Street, My Mom said, “Guess What?” I answered, “What?”, She followed, “Your Special Needs was Named!” she followed by telling me that Dr. Potocki & Dr. Lupski in Houston at Texas Children’s Hospital named My Special Needs, “Potocki-Lupski Syndrome” or PTLS. I thought, “Finally! I can easily explain about what I had to People!” because before it was just “A Duplication of Chromosome 17” which first of all, I had No Idea what it meant so, It was hard to explain to People and Second of All, Most People, except Medical Doctors, knew what a “Chromosome Duplication” was. So, To say that I am Thankful to Dr. Potocki and Dr. Lupski for naming it, is an Understatement. Thank You very much for all Your Hard Work, Dr. Potocki & Dr. Lupski! Now-a-days when I tell People about it, I tell them that it is Autism-like Behaviors and Very Unique. It also helps to just say it like My PTLS Sister, Danielle says it, “Just Look It Up.” Anyway, so Now I’m going to show exactly what I wrote on March 8, 2007 and I’m going to tell you it is very different from The Way I write now. To Give a You a Little Background, I was in the Middle of one of My First “Christianville Spirit Series” highlighting People that were Important to Me. In This Edition of The Series, happened to be about My Mom.
Newsletter for March 8, 2007: Entitled “Julie Smith-Centeno Edition”. “CHRISTIANVILLE METRO HIGHLIGHT: Meet Julie Smith-Centeno{or Julie Centeno; whichever you call her}. Julie Smith-Centeno around my house and The City of Christianville is known as My Mom. My Mom is the sweetest and funniest person you’ll probably ever know. In fact, I’ve heard many stories that people are jealous that they don’t have a mom like my mom. My Mom is a Massage Therapist{and, they say she’s good one too} and she also teaches a Anatomy and Physiology Class; {ask her about that one} and yet she’s home enough to take care of 2 Teenage Kids, My brother Michael and myself. oh, and did i mention, she’s SINGLE MOM. yea. if Y’all were in her position i don’t know anyone would make it. but, there’s a chance but, i doubt it. but, as i was saying she’s pretty cool mom. i mean, every now and then i’ll ask her to take me on a drive somewhere because i love travel and stuff and she’ll do it. and, she enjoys it too. one time she even took me to Texarkana and back just so i could see the roads and stand on the Texas-Arkansas line. To the medical world of Houston, TX my mom might as well be known as one of The Capitols of My Special Needs. which actually has a name. It’s called Patocky-Lubsky Syndrome. What makes My Mom so funny{in case you were wondering} is that she comes up with funny sayings and jokes like everyday. so, that’s what my mom is like. the awesome mom she is.” So, as You can see There is a Lot of History behind PTLS Awareness Day! Now, that I think about it, as I was re-typing that newsletter, I’ve noticed that My Writing has changed a lot since that Time as well as The Letters that I typed were smaller than Today. All in all, This Year’s PTLS Awareness Day Motto is “Be Seen...Wear Green”, thanks to PTLS Family Member, Samantha Lamb.
Thanks for Reading The Christianville Spirit. Happy PTLS Awareness Day! Remember, Be Seen...Wear Green.
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