Wednesday, March 4, 2015

Trisomy Awareness: EXTRAORDINARY (Day 4)


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Today's key word is EXTRAORDINARY ......

Noah is an amazing kid.  It has been an utter joy watching him grow from itty bitty .... to this big ol' teenager.  (sigh)  I can't believe he's a teenager - seriously - where has the time gone?

 Noah has been through so much in his 13 years, more than most people go through in a lifetime.  He's been through countless surgeries and tests and doctors visits, he's had ambulance rides, hospital stays, "I don't know why he's so sick" moments, broken bones, and he almost died.  He has hearing loss, learning disabilities (ADD, Dyslexia), he has Aspergers and some major anxiety ....  his kidneys have to be watched now, due to them going into failure .. but they healed for the most part.  Now every time he gets really sick he pees the color of apricot preserves.

But this does not DEFINE Noah.  This is just what this young man has been through. It had molded him, and shaped him - but it does not DEFINE him.   Noah is very passionate.  He loves animals (he's named right, huh?) ...  if he could have a Zoo, he would.  He loves movies, and dragons.  He loves Pokemon and Club Penguin.  He loves Minecraft and has an amazing obsession for Doctor Who.  His favorite Superhero is Batman and he called Spiderman "Peter Parker" instead of Spiderman.  He has this huge want to know, and although he struggles with learning, he tries so hard.  He likes his big thick hair, and he hates haircuts.  His favorite food is Chicken Nuggets and French Fries, and he loves my cooking.  He's gone from unwilling to try new foods, to being willing to give anything a chance.  He loves his brothers because his heart is sooooooooo big.  He is amazing.

Noah has Mosaic Trisomy 16.  Trisomy 16 is not compatible with life. There are zero known cases where a child with Trisomy 16 has survived, infact, most pregnancies resulting in a Trisomy 16 baby end before the first trimester and is said to be the leading cause of miscarriage (according to some literature.) There are less than 100 known cases world wide of surviving children with Mosaic Trisomy 16.  When Noah was born in 2002 it was around 35.  The advice given to parents who find out about this diagnosis during pregnancy is to terminate.  That was NOT our choice.  We were told he wouldn't live, we were told he wouldn't come home.  He wouldn't even survive the pregnancy.  We were told that IF by some MIRACLE he came home, he would be so mentally and physically delayed it "wouldn't be worth it" .... and yet, my son, who has Mosaic Trisomy 16, is 13 years old.  He is beating the odds because we didn't listen to what they medical community said and we trusted our journey.  I had to prepare myself for the chance he wouldn't make it, but I had such high HOPE that he would.  He shocked and amazed everyone, and he continues to!  He is The Boy Who Lived! There are a lot of Chromosome abnormalities.  They are not limited to Trisomies.  There are additions, deletions, and multiple changes in the Chromosome make-up.  Educate yourself!!  Ask me questions about our journey!  We love telling Noah's story! 

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