Winner of the 2009 Community Leaders Award for Youth Leadership

Trent University Award for Youth Leadership 2009 Recipient Lewis Schofield Watch Clip

 

LEWIS SCHOFIELD

Giving Hope through Knowledge

“Understanding is really important. It’s where all good things begin, don’t you think?” says Lewis Schofield, the 14-year-old winner of the Trent University 2009 Community Leaders Award for Youth Leadership.

Lewis educates youth and adults globally about Autism, Asperger’s Syndrome and Myasthenia Gravis, an extremely rare and complex neuromuscular autoimmune disorder for which there is no cure. Lewis raises money for Autism organizations in Canada and the United States while promoting awareness, tolerance and acceptance of difference through his artwork, writings and videos in the classroom, in the community and on the internet.

At age five, Lewis was diagnosed with Asperger Syndrome which affects his ability to communicate and interact with others. Due to other health issues at birth, doctors predicted that he would not survive. Since then he has helped others understand life with Autism by creating a website, writing blogs and making videos and podcasts with information on diagnoses and medical procedures.

“I want to give other people hope through knowledge. Fear only happens when you don't know what's going on, how to deal with it and what the end result might be,” says Lewis. “If you look at fear and label it as a problem, you can work towards finding a solution. So I'm hoping that my work helps quite a few people around the world to find solutions to some of the problems they are facing.”

On his website, www.thisislewis.net he posts his own stories, poems, “Lewisisms” and artwork. His tag line is: "Lewis Schofield - Professional kid with cool ideas and Asperger Syndrome and now, Myasthenia Gravis, too!" He raises money for autism organizations in Canada and the U.S. by selling his Art Cards online. He is also a junior moderator on FAM Family Autism Forum on Yahoo groups, providing parents with insight and understanding from a kid’s perspective on living with what he calls “an alphabet soup of diagnoses.”

Lewis is also a “SouperIntendent” and regular contributor to Irked Magazine, where he has attracted readers globally since 2006 for his writings, interviews, information and currently a series of humourous videos, “Wisecrackin’ with Lewis Schofield.” “I guess I'm just not afraid to say what I'm thinking when it really matters to me,” he explains.

In his interview with the International Best-Seller, Donna Williams, Lewis is asked about the “extras” that he has been diagnosed with.

“I understand that you’re a kind of burger with the lot, that your AS includes added extras,” Williams asks. To this Lewis replies, “Boy oh boy – do I ever have extras and it’s ketchup for sure. I have Anxiety Disorder, Sensory Integration Disorder, Obsessive Compulsive Disorder, Attention Deficit Hyperactive Disorder, Oppositional Defiant Disorder, Learning Disabilities, Non-Verbal Learning Disabilities, Severe Allergies and Asthma. That’s a lot of things to have on a burger, don’t you think?”

Lewis was diagnosed with Myasthenia Gravis in 2008, a rare autoimmune disorder and neuro-muscular disease usually found in seniors that causes extreme fatigue and muscle weakness, slack jaw, semi-closed eye lids, face droop and trouble breathing. He created a video called, “Tell Me What Time It Is,” on You Tube describing his experience with the diagnosis and explaining the procedure of Intravenous Hemo Globulin (IVIG) treatment. The video includes text with facts about the disease, narrated with original music composed by Lewis.

“He exhibits a startling and rare ability to take his pain and play with it, to communicate it to others and have them learn from it,” writes Sacha Vais, Managing Editor of Irked Magazine.

Lewis was able to complete his studies at Saint Teresa’s and fulfill elementary school graduation requirements, but he wasn’t sure if he was going to be able to make his graduation ceremony. He was scheduled for a Thymectomy at Toronto Hospital for Sick Children on June 10, 2009, twelve days before the ceremony. The procedure removes the thymus gland, a small gland behind the heart and has a 15% chance of sending the patient into remission.

Surviving the major surgery and determined to get his diploma in person, Lewis doubled his resolve and with the help of some extra sleep and a wheelchair was able to attend. He received a spontaneous standing ovation along with a Medal of Perseverance “for giving 100% and making a positive difference within the school community 2008-2009.”

While still in the classroom, Lewis made a DVD for all of his peers about all of the things that were medically going on with him, impacting on his teachers and fellow students’ lives. “Lewis has taught the staff at Center Stage Performing Arts more about Autism, Muscular Dystrophy and Myasthenia Gravis and has given us the ability to involve other afflicted children in our programs,” says Angella Demell, Executive Director at Centre Stage.

Lewis describes how being the way he is makes him strive harder to get things right: “It makes me want to change things in the world so kids and babies feel safe almost all the time. It’s not enough to want to make things better for people. You have to really make things better …You don't have to do something really big to make a difference. You just have to do something. Otherwise, nothing changes or gets better.”