b~ Linda Crabtree

Executive Director, CMT International

For years now we’ve been searching for someone in the limelight who has Charcot-Marie-Tooth disease to help introduce CMT to the public. We need Someone with vitality, charm, a great smile and most of all a very positive attitude about her CMT. We’ve finally found that person in Kyra Levy.

I guess it started a month or so ago when I began searching for Canadians who were famous and happened to be disabled for an article I was writing. I was directed to a talent agent in Toronto who handles only clients who are disabled. I asked her if she could list disabled clients for me who had "made it" and told her I had Charcot-Marie-Tooth disease. She said, "Say that name again!" I carefully enunciated C-h-a-r-c-o-t-M-a-r-i-e-T-o-ot-h and she said, "I have a client with that disease. She’s one of the kids in the hit TV series, DeGrassi Junior High."

I almost fell off my chair.

We know this newsletter is read by people in more than 30 countries and we know that some of you may never have heard of the TV show DeGrassi Junior High. To elaborate a little, it was an award-winning, hit TV series frankly focusing on the lives, trials and tribulations of a group of young teenagers. It was produced and shot in Toronto, Ontario, Canada and played for four seasons until the leads got too old to be going io a junior high school. To adjust to the maturing actors the series simply became known as DeGrassi High. In 1990 the writers and producers decided to wind

down the show while it was still high in the ratings. Since then the main characters have come together for a two hour special called School’s Out. And now there is a documentary series being produced called DeGrassi Talks.

I talked to Kyra recently from her home in Toronto where she was studying her lines for the next day’s rehearsal of The Coming by Paul Kirby of Caravan Productions which will run for two weeks at Harbourfront in Toronto. It’s a five hour environmental musical with audience participation (they are asked to dress to be taken to the end of the world) and Kyra has the role of PCB. one of the four leads.

I asked the questions, Kyra answered.

L.- Where were you born? K.- In Toronto.

L.-When were you diagnosed with CMT? K.- I was misdiagnosed first. The doctors would watch me go up and down the stairs when I was little but no one could come up with a diagnosis.

L.- How badly does it affect you?

K.- When I was 13 years old I found I couldn’t hold on to my tennis racket and lost my grip a lot. I went to the doctors and they started talking about operations and they 1ength~ned the tendons in my feet and straightened my big toes. Now I wear ankle/foot orthoses, the plastic ones with the Velcro I’ve noticed my feet are pretty good. Tennis is still my favorite sport, I swim, I have my bronze medallion, but my mom won’t let me do downhill skiing or waterskiing. I go hydrosliding, you lie on a board and it pulls you, instead. I do absolutely

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everything. I’m a total trouper. I think I’m the first person to crack their braces at camp. I taught drama at Lunenburg County in Nova Scotia and was a councellor for 9 to 13-year-old girls.

L.- Does anyone else in your family have CMT? Do you have any brothers or sisters?

K.- My grandfather had it but they didn’t diagnose it until he was in his 70s. I have a little sister Bianca, 15, and an older sister Hyla who is 21 and they are fine.

L.- Are they in the business?

K.- Hyla is interested but from the other side of the camera. She has studied film at McGill in Montreal and I might add my \\hole family is extremely supportive.

L.- What was high school like?

K.- High school was really horrible. I went to Forest Hill Collegiate for four years and it was the worst four years of my life. I didn’t have a single friend, not one person to talk to on the phone. I was made to feel I had something really wrong with me. My mom had a long talk with me and told me it was my disability and I didn’t fit; I was different and unique. I thought there was something wrong with me. Now I know that kids can be very insecure and if you are different they sometimes don’t have time for you. It certainly was a learning experience! For my last year (L.- high school can be five years in Canada) I went to Leaside High School and it was totaly different.. .they cast me as Rizzo in the play Grease, one of the leads.

L.- Have you always wanted to be an actress?

K.- Actually up to grade four I was determine to be a teacher. I used to skip gym and sneak into my classroom and pretend to teach the kids and correct their math books and I got a C in gym. I used to get mx dad to go down into the playroom in the basement to play school and he’d put up his hand to ask to go to the bathroom and never come back. Somehow after grade 5 1 changed my mind. I’m not shy at all. I love entertaining people and that’s when I decided I wanted to act. I sing too.

L.- Were you afraid your CMT would hold you back?

K.- I don’t even think about myself as having a disability. I hate anyone who sits around feeling sorry for themselves. I’m a go-getter. Before I got DeGrassi I really v.’anted an agent. I went around to about four places; it wasn’t directly said but it was clearly implied that I wasn’t taken on because of my disability. I ended up getting (the part in) DeGrassi myself. I heard about it from a friend, went through a month of auditions and they asked me if I would mind being in an electric wheelchair and play the character of Maya. There’s a book out about her now with a picture of me on the cover and in it Maya gets her first boyfriend and her first job. You can get it in any bookstore. The author is Kathryn Ellis.

L.- Was the part of Maya considered one of the leads?

L.- Did they ever do anything specifically on disability around you?

L.- Why did your character use a wheelchair for mobility; you don’t use one yourself?

K.- They wanted a character in a wheelchair and I had no trouble with that.

L.- What do you use?

K.- As I said I just use AFOs. My hands are weak and I need extra time for exams. There’s not much feeling in my fingertips and I’ll think I’ve got something gripped between my fingers and I look down and there is nothing there. I tried hand braces but they made my fingers blue and were very cumbersome.

L.- What was it like on the set?

K.- Incredible! We became almost like a family. It branched out; we did a commercial and travelled all over. I also had an eight minute film on my life done for The Challenge Journal.

L.- Your CMT obviously doesn’t hold you back but what about fatigue?

K.- I get tired, yes, but only after a very full day. I really don’t let it get me. In the winter and in cold weather my feet get so very cold. I did the driving course at the Hugh McMillan Centre (a rehabilitation centre for disabled people) because I thought I was going to have to use special equipment but it turned out I can drive without it.

L.- Are you still going to school?

K.- Yes, I just finished my first year at Ryerson Polytechnical School, and I’m working towards my B.A.A. (Bachelor of Applied Arts). Around 1000 people try to get in every year and about 150 people make it. I was lucky. The first year is all radio, the second year is all television, but you learn everything.

L.- What do you have planned for the future?

K.- I have two more years left at Ryerson and I’d like to do movies. I think disabled people are finally starting to break into the entertainment business and my all-time goal is to see more disabled people playing ordinary roles.

L.- What kind of roles would you like to play?

K.- Challenging roles. I almost got a part that would have been filmed in Sri Lanka. It was narrowed down to me and one other girl. She got it but that’s okay; I don’t get disappointed. They’ve asked me to do another smaller part.

L.- How does it feel to be famous?

K.- I don’t know; I have no ego at all. I sign 200 autographs and I love it, but people telling me how great I am and that I’m a role model just blows me away.

L.- Is there anything you’d like to say to our readers especially the ones whose age is near yours?

K.- I feel that everything that happens in your life you take as a learning experience, everything happens for a reason, and it is meant to make you a better and a stronger person. Don’t let anyone ever make you feel as though you are not worthwhile and special.

We’ve got some plans for Kyra and we hope she can work us in around her school and paying jobs. We thank her for giving her time to CMT International and we hope that awareness of CMT skyrockets right along with her rising career.