Evan Samson

Click here to donate towards my Walk-a-thon on May 21st!

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6 Years Old

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 pracitces 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 times 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 my 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.

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Evan is starting the special education school soon. He has been walking since he was 2 1/2 years old with some assist. He loves playing with his brothers. He loves going to Ethan's school and be around kids. He is always happy, loves to play with anything plastic, and loves to play with water. Evan goes to physical therapy once a week, occupational therapy once a week, and speech therapy twice a week. We have been learning on alternative ways of communication and Evan just started signing "eat" after only 2 weeks of constant repetition using the ABA technique. He eats good and his favorites are grapes and bananas.

Evan participated in his first walk-a-thon last year despite having seizures all day. His first walk was a success. We are hoping to see all of you at the 2008 AS Walk-a-thon. Your donations will make a tremendous difference in the lives of so many Angelman Syndrome individuals including me. I participated in the Angelman Syndrome Therapeutic Study in 2007 conducted in San Diego. We are hoping that more research will be granted that would further find ways to improve the lives of the AS population.

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On September 2, 2004, an angel came into our lives. Evan Gabriel Samson was born from a healthy pregnancy and normal delivery. He is the youngest of 3 boys. He was diagnosed with Angelman Syndrome the day before he turned a year old. He had normal infancy until he failed to meet his developmental milestone. He wasn't rolling over, crawling, holding his bottle, nor making any sounds. Months past and he continued to be developmentally delayed. His pediatrician, Dr. Vicki Hom referred us to Dr. Colleen Morris, the Geneticist. She then diagnosed him with Angelman Syndrome, confirmed by the Methylation test. The diagnosis brought unimaginable grief to his family. As hard as it is, his family continued to cope with the diagnosis. It seemed like our lives turned upside down in the beginning. We struggled to cope with the Evan's diagnosis. We grieved for a loss of a dream and hope that Evan will be like any other boys. As painful as it is, we have to convince ourselves everyday that there are things in our lives that we can't change. But we do realize that we have the power to help improve Evan's life and that has given us the strength to move on. It was only after we accepted the diagnosis that we have truly appreciated the blessings of God in Evan. He is an inspiration to all of us. We love him so much and we'll continue to help him in any way we can. He brings joy into our hearts.

Evan loves to eat fruits, likes to play with water, plays with door knobs and gives everyone a big sincere smile. Although he doesn't talk, his smile is worth a thousand words.

Evan started Physical Therapy at 8 months old, Occupational and Speech Therapy at 11 months old. Evan had to be taught everything from rolling over to crawling, to feeding himself and walking. He finally started walking by himself at 2 1/2 years old.

Evan has seizure disorder. He had his first generalized seizure at 17 months. He takes Depakote and Zonegran for Seizures. He also takes Prevacid for the Reflux. He is also a part of an Angelman Syndrome Research at Children's Hospital in San Diego headed by Dr. Lynne Bird.

Everyday we look forward to Evan's progress. We appreciate everything that he has done. We thank God for Evan. He is our Angel.

Please click on picture to enlarge.
	Newborn
1 Month	2 Months	3 Months
4 Months	5 Months	6 Months
7 Months	8 Months	9 Months
10 Months	11 Months	12 Months
2 Years Old	3 Years Old	4 Years Old