Nothing stops me
by Julie Lemieux
Hello,
My name is Julie Lemieux, I am 38 years old, and I was diagnosed as having Friedreich’s Ataxia at 8 years old. At 12 years of age, I was operated on for a curvature of the spine. It went well. The convalescence was rather difficult because they put a cast on me from the neck to the buttocks for eight months. In one way, I am very glad to have had this operation for with the years the regression of the Ataxia did not affect my corporal preservation.
I therefore did my secondary studies on foot, I got around without a wheelchair but I held onto walls and the arms of friends. When I reached cegep, I used a wheelchair at school and my walker at home. On the other hand, at university I used a wheelchair permanently.
In order to live well with Ataxia, I learned at a young age that a good entourage (friends, family) is very important. I was very lucky in this way: My family is close, helpful. In spite of the death of my father, my mother was always close by. And my girlfriends treated me as a person who is physically normal. Once a week, they came to get me and we went out here and there (discotheque, brasserie, bistro, terrace). When one feels liked, appreciated, one learns the simplicity of life. There were persons who felt difficulty to frequent me but it was their problem and not mine. These persons only had to get out of my way for I was continuing on. I met a boy whom I was with for a long time. After 5 years, when he left me, I thought that the sky was falling down on my head. One fine day, I woke up from this nightmare and told myself that I should find my fighting spirit once again and continue to fully live. I was not going to let someone throw me back in my way of life.
Later I met a nice young man from Belgium on the Internet. It was in 1997, in 2001 we got married and as my husband had a house and a job in Belgium, I left to live there. After two years of life together, we spoke of having a child. As I always liked children, I said to him <<why not ?>> So we went to see my neurologist in Belgium, he had my husband undergo a DNA test in order to know if my husband was a carrier of the Ataxia gene before starting our trials. My husband was healthy so the child would be only a carrier of the gene. Benjamin was born when I was 37 years old, in Belgium. I had a caesarean and everything went well. We decided to come back to live in Quebec for here I had more help to take care of Benjamin (my mother, C.L.S.C., friends).
I do not regret having Benjamin at all even if since then my disease has increased. Benjamin is my entire life. He helps me to keep my spirits in good shape!!!! My husband and I try to teach him to love without prejudices, a big challenge!