hi , my son was diagnosed also with 16p13.3 he is under royal brompton and gosh , i really would like to get in touch with you please email me or leave your email or contact form that i can reach u on this blog

Hanaro Taekwondo

From a Facebook post from Livingwell Taekwondo

Kent, UK

Hi Alex, I hope this message finds you well and enjoying all your gifts from this Christmas. I read our toughing life story so afr and send my well wishes to you and your family. I heard you started Taekwondo with my good friends at Livingwell, and Master Derek Sunner. Derek is a lovely man and will look after you and teach you well. I hope you enjoy your Taekwondo lessons and you have lots of FUN...! Keep kicking and all the very best for your gradings..

Unique

Columbus, Ohio

I just learned that my 8-year-old daughter has a microdeletion on 16p13.3. I would love to connect with you and others... feeling alone right now. We have struggled along the way, and while it is a relief to understand what her diagnosis is, it is difficult with it being so rare and feeling like no one understands, or has ever really understood, the struggles we have had.
We are lucky that our daughter is overall a happy child, and generally in good health... I appreciate you sharing your story of Alex online, I can't imagine going through all you have had to endure. xx

Arkansas, USA

Hi,



My son’s name is Seth and he was born December 2, 2000. His molecular microarray report states a 1.2Mb terminal deletion was observed at 16p13.3 from linear location 36,566bp-1,315,044bp (hg18). He is ten but we just found out about the deletion a few months ago after years of other tests and evaluations.



He has been developmentally delayed from the beginning, across the board including physically, socially, mentally and emotionally. He has ADHD as well as signs of OCD, anxiety and signs on the autism spectrum. He has poor muscle tone, and very tight muscles and tissues in his calves and ankles. His right foot is significantly smaller than his left and he doesn’t not walk normally on it- he is in a brace to help correct that. His fine and gross motor skills are not what they should be at his age. He is waiting for an echocardiogram as well as an ultrasound on his kidneys to make sure those areas are not affected.



It seems almost impossible to find others with this deletion but Unique directed me to your blog. Please email me at wendymomofseth@yahoo.com I would love to hear more about Alex.



Thank you,

Wendy

Unique

Indiana, USA

My daughter is 8 yrs old and has "microdeletion on -16p chromosome"
As of now she is one of two in the world with the same thing. The other child is one state south of us. He is the same age. They have alot in common but each have their own set of special complications.
Paige has a tethered spinal cord. She will get a second spinal surgery in the next month. I am very nervous...
The other Child's mom is Allie Marshall, son's name is Nathaniel.
He has brain tumor issues and seizures. That is about the only major difference between them.
If you are interested in comparing notes reply or find me on Facebook. Mindy Scott Martin, Indianapolis, INDIANA

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Jakarta, Indonesia

Alex, I'm touched by your stories, how you struggle for living and all that. I'm jealous because I don't have the spirit to live the life like you do.

You're amazing

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Denmark

Hey Alex. I hope you are doing well, I wish you all of the best of good luck in the future! You are an amazing person, full of life, and it really seems like you really apriciate life. More than anyone else! And I think we all could really learn of that! Stay cool! - Anne, Denmark.

Argentina & South Africa

Hope you are recovering well. You are a amazing!!

Kentucky.. United States

Alex, I hope you are doing ok. God bless you.

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derby.uk

dear alex.my son is a fellow traveller.you are an inspiration to him and to us all.god bless