The Christianville Spirit
The Spirit that Sparkles
March 4, 2015-TCS # 440
So, My Readers, I would love to Wish You a Happy PTLS Awareness Month! Yes, That is Right, it is PTLS Awareness Month. If You can believe it, A few years ago, There was No Such Thing as PTLS Awareness Month, The Saying, “Be Seen, Wear Green for The Happy PTLS Gene” (that is The Extension of the “Be Seen, Wear Green” saying), There was No Logo (The Key), and There was No Such Thing as Potocki-Lupski Syndrome. Before March 8th, 2007, Potocki-Lupski Syndrome was just known as “A Duplication of Chromosome 17”. Now, that is technically what Potocki-Lupski Syndrome is, A Duplication of Chromosome 17p11.2. But, Try explaining that to Someone when You want to tell them how Unique You are. It took many years to get where we are today. We are at 1 in 20 Thousand Kids Now. My Unique Syndrome was named for Two Very Down-to-Earth Doctors in Houston, Texas; Doctor Potocki and The World-Renowned Doctor Lupski (although He won’t admit it Outfrontly because He is a Humble Man). My Mom tried many years to get them to Name It. She, Of Course, had kinda settled on “Christian Syndrome” if They were not going to name it. Funny, My Syndrome, could have been named after Me! So, That is The Background of The Story of Potocki-Lupski Syndrome. So, Why I am I so Celebrative about PTLS Month? It is Just a Month after all, with St. Patrick’s Day and My Mom’s Birthday. But, To Most People, It is just a Month, but To Me, It is a Chance to Celebrate My Uniqueness and Celebrate The Fact that, Yes, I am That Unique. I still Remember, The First PTLS Awareness Day, before Anyone knew about it. It is at a Time when My School screwed up My Class Schedule, meaning that I had to go Home early. In Short, I chose The Wrong Class! Anyway, on March 8th, My Mom picked me up and we pulled out on the street, and start driving home when My Mom told me. “Guess What?!” Mom says. “What?” I respond with. “Your Special Needs was Named!”. Now, at the Time, I needed a Minute to absorb what She was saying, “My Special Needs was Named?!” then, She told me, “It was named after The Doctors in Houston, Doctor Potocki & Doctor Lupski”, She continued, “It is called Potocki-Lupski Syndrome or PTLS!”. I was so Thrilled! I finally could say, “I have Potocki-Lupski Syndrome!”. After about a Year of Figuring it all out and Enough PTLS Families (Today known as PTLS Family Members) were around, we started to tell them. It seems though, now that Everyone knows, They are starting to Make It Something that it is not. It is a Time for Unity in support of Having PTLS and For those who Love us. It is a Time for Raising Awareness. We have a PTLS Foundation that working hard to help support us and It is Important to make everything Positive because We PTLSers see Life in a Positive Light.
In Order Words, Show that We PTLSers matter in The World! We are NOT Special, We are Unique! Guys, PTLS is a Big Gift from God to You. We want to be seen and be heard! Now, Yes, Your Child may be behind and Not Progressing the Way You want them to but, We need to Stay Focused on What all of us PTLSers CAN do, But, On Their Own Time! It is Important to Me, and I know All My PTLS Brothers and Sisters, that You believe in Us and All we can do. We are the ones that Have It and We want you to be Proud of Us. We need you to stay positive for us. No, PTLS is not Bad. It never is Bad, We are Very Happy People. But, There are things like Anxiety, Irrational Fears, and Being Overwhelmed when We want to have Fun but, We need you to understand us so we have time to adjust. So, I will finish with This, I have gotten word that There is Someone, “Mom X”, we will refer to Her as, believes that My Mom writes these newsletters and Anything else that I write. It really hurts me that Someone would ever say something like that about Me. I am Here to Tell You, that This Newsletter that I Write Every Wednesday is 100% Me. It is All Me, Christian Smith-Centeno, writing this. All that My Mom does is help me Edit it for Missed Words I may have skipped over in Excitement. (The “The, And, Is” gets me Every Time!) So, Thank You to My Mom for Helping Edit This Newsletter, even though I may or may not listen! After All, Every Writing, No Matter What it is, needs a Little Editing. All in all, I hope that You enjoy PTLS Awareness Month and Wherever Your Child is in their progress, Celebrate Your Child and How Unique They are.
Thanks for Reading The Christianville Spirit. Be Seen, Wear Green and Celebrate Our Happy Gene.
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