My nickname is tuttie. I was born 6 weeks early and never moved in my mommy’s belly.
From the start my parents knew that I was special. At birth I couldn’t maintain my body
temperature and finally at 5 days I was able to go home. At my four month check-up my
doctor noticed that my soft spot was closing. He sent me to another doctor, which he
said I had Crainosynostosis, which is where the bone plates in your skull fuse together
too soon. I had cranial reconstructive surgery on my skull to open the soft spot back up.
After surgery my parents noticed that I wasn’t developing like a child my age, but they
thought that it might be because of the surgery. Then my mom noticed that my skull was
returning to its shape like before the surgery. My parents took me to another doctor and
he said I had to have surgery again. This time they put me together like a Lego, they put
4 dissolvable plates and over 150 dissolvable screws to keep my head from returning
to its prior shape. After my second surgery I was now 2 years old and my parents still
didn’t think that I was developing like a child my age. They took me to see a doctor that
might know what was going on with me. He look at some previous scans of my head and the
way my facial features were, and told my parents that he was going to test me for three
syndromes. The first test was Cockayne Syndrome and there were two other ones. The
test was supposed to take 8 weeks, but at 11 weeks my parents got the call, that through
a blood test, it was confirmed that I had Cockayne Syndrome Type 1. I was diagnosed
June 30th 2011 and it has put an end to my parents search.
I love to crawl around on my knees since I am not able to walk. I used to be able to walk a couple steps
on my own but I reverted back and can only walk with a walker for short periods of time. I
can say a few words and sign that my family can understand.
Baths are my favorite, but anytime I see or hear water I have to check it out and want to get in.
My favorite person is my big brother Dustin. I play with any toy of his, even if
he says I can’t. I love anything electronic and I am fascinated by lights and especially
ceiling fans. I love the outdoors, even if the sun bothers me. I get really excited when I
see animals, even though I might not be gentle with them. When I see someone I really
like, I give the biggest hugs and kisses anyone would want. I can feed myself, but I am
kind of messy. I have had 2 eye surgeries and now I can see great. My hearing is questionable. My
parents think I am getting louder because I cannot hear but the real reason is that I can get their
attention. I also take naps during the day and sleep 10-12 hours a night.
I am the one and only cutie patootie!!