Mackenzie Kitner

Mackenzie Kitner

8x10 mackenzie

Age:  4.5 years old

Weight:  18lbs

Height:  29 inches

Mackenzie (aka..Kenzie) is our incredible little angel.  She is 4 years old and has been described by most as “One of a Kind”. Her simple smile lights up the room. She touches the lives of everyone that meets her. Mackenzie is not the average 4 year old. She can not talk she can not crawl or walk. She can sit up by herself if you get her in just the right position. However, she is an awesome Roller. She can roll all over the place. Mackenzie was born 6 weeks early and is a twin. She has an amazing twin brother, Brayden who is very protective of her. Mackenzie loves to be with her brother. She is so content just watching him play and having him beside her.

Mackenzie is almost 29 inches tall and weighs about 18 lbs. She wears 12 month clothes and is about the same size as a 9-12 month old baby.  Mackenzie has been a fighter since she was born. She was in the Neonatal Intensive Care for 2 1/2 months, and underwent 2 eye surgeries to remove cataracts before she was even a month old. She has undergone several additional surgeries for her eyes, feeding tube placement, and most recently brain surgery. Mackenzie took on another role as Big Sister last year.  She has a little sister named Marissa that she loves to play with. I bought Mackenzie a shirt that says I may be little, but I’m the big sister. Marissa has already passed Mackenzie up in size and what she can do, but we always make sure she knows Kenzie is in charge.

Mackenzie was just recently diagnosed with Cockayne Syndrome (CS-type 2) after 4 years of searching for answers.  She visited countless doctors and specialists and no one had any answers for us until we visited Nemours in Jacksonville in October of 2008.  The genetics folks we saw there said she had some similarities to CS, so they thought we should have her tested for that along with a couple other syndromes they thought were possibilities.  They didn’t really tell us much about it, so of course we came home that night and got on the internet to see what we could find.  We came across the Share and Care site that night and we knew at that moment Kenzie had CS.  It took several months to work thru the details of getting her tested, and several more to get the results back to confirm what we suspected.  On March 5th, 2009 we finally got the diagnosis we had been searching years for.  It was not the diagnosis we would have hoped for, but it was finally the end of one chapter and the start of our next journey with this new diagnosis.

There’s so much more I could tell you about Mackenzie, but that’s a good start.

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