Arrived at the Westin O’Hare for the Costello Conference

Today, Tuesday July 26th, I arrived at the WESTIN O’Hare for the conference on Costello Syndrome.  I love MY hotel.  Mommy and daddy hope to learn more about the genetic condition I have so they can better understand me – like why I cry all the time and why I don’t like to sleep much.

So far I have met a lot of nice kids!  Rachel is my new best friend!  She is 18 years old and takes very good care of me.  She pushes me down the hallway, wipes my drool, and puts my pacifier back in when it falls out.  Sometimes, I push the paci out just for fun to make her have to put it back in!  I’m going to miss her when we have to leave.  But the funny thing is she lives in mommy’s home town of DeWitt, Iowa!  That is such a coincidence – especially considering there are only 2 or 3 Costello kids in the whole state of Iowa that we know of.

They said they have over 40 other families here that have someone impacted by Costello Syndrome.  With only 200 to 300 people in the world with Costello, we have a good turnout at the conference.

It is kind of scary to see the wide range of ways people are impacted by Costello.  Costello affects many different systems in the body.  Some of the issues with Costello kids include: heart problems, cancer, chiari malformation, mental delays (some can read at an elementary level while others can’t read at all), eating difficulties, sleeping issues, anxiety, behavioral issues, walking difficulty (some are in wheelchairs and most need Achilles Tendon lengthening surgery), breathing issues, severe scoliosis, short stature (some are not even 4′), and vision problems just to name a few.  Some Costello kids have had over 20 surgeries!  And some lost their battle with Costello since the last conference so that is hard to hear about.  It makes me sad to think of losing any of the nice friends I have made at the conference.

I can not wait to see what happens in the next few days.


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