Marcus's Story

This is a letter that was been sent in by Wendy & Paul Cain and previously published in Holding Hands (Autumn 2004 Edition).

Hello,

Marcus and his DadWe are the parents of Marcus who is 26 and has SMA Type III and we are hugely proud of him for the way he copes with his condition.

As a young boy Marcus tired easily and fell over quite often (always going through the knees of new trousers!) I personally, used to wonder about the tremors through his body, and he was always on the lean side. Looking back, there were pointers in that he had trouble doing ordinary physical activities, but he coped in his own way.

We moved to another area when Marcus was 10 and eventually got a diagnosis of SMA type III after taking Marcus to our new doctor and numerous visits to hospitals and units in Oxford and then a visit to professor Dubowitz at the Hammersmith hospital (a lasting memory of a very caring gentleman.)

We don't seem able to put into words the total devastation and sadness we felt over the many months it took to sink in. We had no other members of either family with this condition, we had never heard of it before.

Marcus is a remarkable young man and goes about his daily life with great stoicism. Although walking presents a big challenge to Marcus he is able to drive his automatic car and works for a software company in Bicester. The company have been excellent towards helping Marcus in anyway that they can, and he enjoys his work there. On bad days when his legs refuse to budge, he can work from home.

All the usual activities of twentysomethings e.g.; clubbing, cinema, sports, shopping etc, are not possible for Marcus, but with fantastic friends he gets out to the occasional restaurant, pub, friend's houses for get togethers, and BBQ's and never a self pitying grumble. What Marcus may lack in physical strength he makes up for in his wisdom and humour. Always there to listen to a friends problem and never short of a funny quip to cheer! It is with his strengths that keep us going and his determination to lead as normal a life as possible that makes him such a "remarkable young man"

Thank you so much to Professor Dubowitz, Dr Hockaday (retired) staff at JTSMA, Professor Kay Davies, Dr Bayliss Enstone Health Centre, Jane Stein, Elizabeth Burrows O.T, friends Simon and Sonya, Phil, Mike, Henry, Janie, Jo, Sid, Paul, Denise and friends in Southampton and Marcus' long suffering sister Suzanne!! And indeed, lots more who have helped immensely professionally or through friendships, making life brighter and less challenging and full of optimism for an eventual cure for SMAs.

It would be nice to hear from other parents or adults with this condition just so that we all know we are not alone, and can you please reproduce the snapshot enclosed, as we would like everyone to see our handsome son! (Oh, and his dad).

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