Be sure to visit our web site  www.sotossyndrome.org 

to see our new design. *

From there you can learn 

about our organization and 

Sotos syndrome in general. 

The web site is now loaded full of actual photos of our members and individuals with Sotos syndrome. 

New families can join and old members can pay their 

dues with ease.

There is a "Members Only"

 section in which you will find the names of our board members, officers and our advisory board. 

There is a membership roster, archives of past newsletters and photos and presentations from past conferences

*this story first ran in the 

Winter 2006 SSSA Notes.

Megan is almost 13.

Monica has wrote an article on 

what Megan is doing now.

"Look how far we've come."

Megan was born on September 21, 2000, four days before her

"estimated" due date based on measurements taken during sonograms.

Megan weighed 9 1/2 pounds and was 22 1/2 inches long when the

doctors "whisked" her away from me because her lungs weren't

developed. She spent the first week of her life in intensive care as the

doctors then estimated that she was 4-6 weeks premature. During that

time she also had jaundice. It was quite funny to see many 3-4 pound

preemies in intensive care only to find my 9 1/2 pound preemie at the end

of the line!! One of the weekend attending physicians mentioned to me

that she may have some type of overgrowth syndrome, possibly

Weavers. He suggested consulting with a geneticist after Megan was

around four months old. Although this wasn't what I preferred to hear, I

took his advice and scheduled the appointment. The geneticist

confirmed that Weaver's was a strong possibility and so began my

research on the internet and a 

new journey.

My friend, Joanne Weick, recently ran across an old SSSA newsletter....and emailed me the article I had written for the newsletter, shortly after I had joined the association. I had mixed feelings as I reread the article. First, wow......I honestly never run out of things to say....even back then as a new "sotos" parent! Second, I can't believe how far Megan has come! Third, I can't believe how far I HAVE COME 

Some of you have met Megan at the conferences in the last few years and are not aware of where our journey started....this previous article confirms that we started where many of you have started or possible just starting. So...here is the update......

•  Lindsey Caldwell             Minnesota, USA
• James Gardner Gregory       Quebec, Canada
• Ellyn Hefner                      Oklahoma, USA
• Monica Jacobs                      Kansas, USA
• Carrie Leddy                    Minnesota, USA
• Bryan Shelhamer                     Texas, USA
• Kellie Taylor-Penny                 North Carolina, USA
• Sue Jennings                        Ontario, Canada
• Michelle Mercado             Minnesota, USA
• Monique Geiger                    Oregon, USA

With the new members coming onto the board, we had three Board members retire: 

Stephanie Anderson, 

Andrew Sinclair 

and Kevin Williams. 

"We would like to show our gratitude for all of the hard work, time and talents given to the SSSA during your 

years on the board.

THANK YOU!"