In Honor Of Evan Samson

Hi!  I'm Evan Samson.  I was diagnosed with AS the day I turned a year old in September 2005.  I was  misdiagnosed twice with 2 other syndromes before my final diagnosis.  I'm 5 years old now.

Thank you for visiting my fundraising page for the 2010 AS Walk-a-thon in Las Vegas.  I've been participating in the AS walk since 2006.  My mom is coordinating the Las Vegas walk-a-thon this year.  Please help me raise money for the Angelman Syndrome Foundation.  The money raised will be used for education, information, research, advocacy and support for individuals with Angelman Syndrome, our families and for all those who care about us.  I have been a part of the ASF research, which the Natural History of AS.   We go to the Rady's Children's Hospital in San Diego once a year for this research.  This study is very cool as they learn about my behavior, seizure disorder, and my developmental milestones.  My family looks forward to taking me there every year as they learn more about AS.  Hopefully someday the AS researchers can find the cure for AS.  They also try to find the right treatment and best practices for AS so that we can have quality of life.

Last July 2009, our family had a chance to go to the AS Conference for the first time in Orlando, Florida.  We met hundreds of families with kids with AS, AS researchers, and all the great people who help make our lives better.  My brothers enjoyed the siblings workshop and my parents learned a lot from all the topics presented.

I have improved so much developmentally and behaviorally.  I went to the Clark County School System when I was 3 and 4 years old.  However the school won't give me the 1 on 1 aide and the ABA program, despite all the medical recomendations that I need a 1 on 1 aide for safety and medical reasons.  My parents are worried about my safety  as I have been on Strict Fall, Seizures, Choking, and Aspiration Precautions. A new AS Research has also shown that ABA works for individuals with AS.  My parents have been providing me with an ABA home program through the Lovaas Center.  I have a great consultant and tutors.  My mom has been tutoring me too.  I have been toilet trained by time schedule.  I don't use diaper during the day.  I also have been signing better.  My fine and gross motor skills, attention, sitting and waiting skills have also improved.  I also have babysitters who take care of me when my parents go to work.

My family loves me very much and they sacrifice a lot for me.  My brothers Eric and Ethan takes me to their sports games and they teach me how to play baseball.  We also watch professional baseball games together.  They are very proud of me.  My brother Ethan sometimes cries at school because his friends would ask a lot of questions about me and he does not know how to answer them.  You see,   I am very happy  and I  laugh very loud.  I also walk different and wears AFO's.  I may  look different from other kids but I am harmless and full of love.  All  I really want is to be friends with them.  My mom tells Ethan not to feel bad when kids asks about me.  Ethan has learned to tell his friends that I need special help.  He also has felt much better about having a brother like me.  My brother Eric is cool about me having AS. He hugs and kisses me all the time.  He calls me his lucky charm.  He makes sure he gives me a kiss before his games.   Someday I would like to be able to play sports with them.

One person I miss the most is my Grandma Lita.  She took really good care of me.  Unfortunately she passed away last year.  I know she is in the better place now so I try not to miss her anymore.

I appreciate your kindness and generosity.  Please remember that your time, effort and donations will help thousands of people with AS and their families. It will help fund the much needed research that we need.   Hope to see you at the walk.  We have hope because you care.

Offline Donors:

Lety Delapaz                       Sorry I can't be there.                         $100
Paulita Trudell                    I wish I can be there at the walk.     $100
Dr Jeff Schleuning                                                                            $50