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Apr 28-May 04

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Nicholas was born in 2017 with a rare genetic condition called TAR Syndrome.  The condition affects both his blood and his limbs.  His body doesn't produce the same amount of platelets as ours and that causes bruising and puts him at a high risk of hemorrhage and severe bleeding.  In order to deal with this he has a central line, and he receives platelet transfusions every 12-14 days.  I am always surprised by his ability to smile and be so joyful no matter way comes his way.  He always has a giggle and a smile for everyone, his first smile in fact as a baby was while in hospital due to an infection. 

His arms didn't develop but he uses what he has, he has found a way to use most of his toys and loves to eat teething crackers.  He was also born without knee joints, but he is working hard at rolling and scooting to get where he wants to go.  We are working to raise money to assist in his care, with surgeries we hope for the chance for him to walk one day.  

 

When he was born we were scared, we spent days in the NICU and didn't know what the future would hold for him.  As a mom you just want your baby to be safe and healthy.  You want to be able to calm your older child who has prayed for years to have a little brother, and tell him it will be ok.  Nicholas looked so fragile, born at 4 lbs 10 oz  covered in bruises.  I didn't know what to say or how to make things better, I was lost.  What I know now, is that he is strong.  Nicholas has a spirit that wants to explore and be out there to experience the world.  Our beautiful son, the little brother to an older brother that wanted him so very much will do great things and having our two boys is the greatest blessing of our lives.

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