Hello Friends!  Happy Global Genes Day!  Around the world, many folks are raising awareness of rare genetic diseases!  So little is known, as we have learned with my deletion.  Here is what my Mommy wrote on Facebook today.  She loves me, but she loves ALL little kids, too!!

"7,000+ rare diseases-..1 in 10 Americans have some sort of rare disease-50% are children-30% won't live to see their fifth birthday-95% have not one single drug treatment.

Those statistics speak volumes.
My genetics appointment spoke volumes.
There needs to be more research..there needs to be better documenting and tracking. If we can learn from each others cases and find treatments for these kiddos then there is no reason they can't live a long happy life!

I am so blessed to be apart of this. After genetics so far only one other kiddo is close to Wyatt..that gives us the amazing opportunity to beat all odds and raise the bar. He is walking..he can say some words..and most importantly he is so so happy. No matter what the battle in our future he is so strong and so brave with so many people in his corner. He might take his time to get there but we will all be there waiting to cheer him on! I love you Wyatt and I am so lucky to be apart of this journey."

OH MY GOSH!  WHAT A BUSY WEEK!  I know I don't sleep much, but man could I use a good nap!  We started on Monday with a visit up to Lucile Packard Children's Hospital to visit with the Genetics Team!  HOW APPROPRIATE since Global Genes Day is on Thursday this week!  My mom asked lots of questions and gave them lots of information as to my physical and mental development.  They talked about how important it is for kids like me to be registered in global databases so hopefully (fingers crossed) we will find kids with similar deletions and someday a Case Study can be published, which will provide doctors from all over the world with specific information about what a deletion at 3p14.1p13 means.

THEN, on Wednesday, we went BACK up to Stanford to have what we hope is my last big test!  The Neurologist scheduled an MRI to see what is going on in my brain and how it is growing and developing!  I hope they are ready to see some seriously amazing stuff in there!  We will have some results in a few days.  It should be interesting!  As for me, THANK GOD it's over!  You know they wouldn't let me eat all morning again!!  Do I LOOK like I need a diet??  Holy cow!!  That didn't stop me from running around like a madman and flirting with the nurses (see the photo above).  No Sir, a guy has gotta have his fun!!

Hey everybody!  It's me, Wyatt!  Guess what?  There is a really cool event coming up that helps people understand a bit about how rare and unique genetic diseases are and how important sharing information and research is for all us special little people (and special big people too).  Check out the website that explains more about the event and other cool stuff!  My mom is working with other nice folks at Starbucks to participate in this event in a big way! 

http://globalgenes.org/world-rare-disease-day/

"World Rare Disease Day World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year) to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.

The sixth annual World Rare Disease Day will be held on Thursday, February 28, 2013. On this day, various activities take place in the United States, Europe, Russia, Japan and elsewhere around the world."

Can you imagine that just four months ago I had a walker?  Look at me now!!!  Wheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Hi Friends!  How are you all doing?  I have been the busiest little boy!  Preschool has been super fun, I love my friends there and the teachers show me new things every day!  Of course, circle time with "Wheels on the Bus"  is my favorite, no wait, "I'm a Little Teapot" is my favorite, oh geez, I guess I love it all!  Except for the other day, that is.  I got my head stuck in a wrought iron shelf support and the poor teachers almost had to call the fire department to get me out!  What a day!

Therapy has also been going really well!  Be sure to check out the video of the "stairmaster" training!  I'm starting to really increase the strength in my quads!!

Did you all have a nice Valentines Day?  We had a party at preschool and I brought home valentines and treats from all my buddies.  Shhh, don't tell, but there's this little girl in my class who sure is extra nice!

Speaking of Valentine's Day, my brother Carter was helping me fine-tune one of my newest phrases:  "I Love You!"  Our doggie loves us, too!