By Lorraine Harman
Februrary 2004
Hi, I'm Lorraine Harman and I am 38 years old, I am divorced and have two beautiful children who I love dearly. I have a Partner Mark and a Mother who both give me help and support. (Does this sound a bit like an AA meeting??)
When I was a toddler I walked at 10 months, however when I started climbing the stairs my mother realised I was only doing so with one leg at a time. She took me to her doctor's who advised her their was nothing wrong with me, this continued until I was 7 years old, finally a locum doctor told her I had Spinal Muscular Dystrophy and I would be in a wheelchair by the time I was 14, at which stage my mother passed out! My mother then went back to see her doctor to complain and was advised they would send me for tests.
I do not have to mention to those of you who have experienced the tests involved when I was a child (many years ago), of the horror and fear that stays with me to this day. After just having a pre-med and then undergoing my leg being opened and a biopsy being carried out while I was being held down I was finally told I had SMA III.
Pre-senior School for me was not a problem: it was all on one level. Although I did know I was different it did not seem to bother me. On sports days I would attempt the High jump and Long jump, which would give the rest of the class a good laugh. However Senior School was a whole different thing. I suppose being a teenager and suddenly realising you are not the same as every one else was just too much for me and I backed away from going to school (mainly because of climbing stairs and trying not to be late for class). I became a problem for the Educational System and so then was shipped to a Residential School, which meant I got a very basic education and was moved away from having to deal with my Disability.
I married at 22 and had my son James at 23 and my daughter Lauren at 29. I can truly say they are the best things that ever happened to me and I love them with all my heart. Life was not easy as I could not carry either child and had to put them into a pushchair to get them from A to B, but it is amazing how you adapt yourself to cope with day to day.
Around the age of 33 I was walking holding someone's arm could do small steps without any aid, however I started falling over with my legs just giving away under me. At the time I was working for a very unsympathetic employer who just kept asking why I had fallen. I started to feel more and more self conscious of my Disability so decided to use a manual Wheelchair, which then lead me to an Electric Chair. Although I have more mobility independence I feel I was forced into a chair before I really needed to use it and would say to anyone in a similar position, just use the chair when you really need it.
I am in a position now where I have put on a lot of weight due to my lack of mobility and every day has become a struggle to do things on my own. My arm and hands still seem quite strong but my leg mobility is very poor. I rely on my son, who is only 15 and this makes me feel very guilty although he is a true angel. I still work full time but for a good employer, but I am trying to get my Book keeping qualifications so that I can look for work where I can be home based.
I have not told my story before but if I can help any one with any questions they have please feel free to contact me via the JT Office. | 
