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We asked parents whose child has SMA, what their other children’s experiences had been of growing up with a sibling who has SMA. Here, David shares his reflections of the close relationship between his sons, Chris and Alex:

Image shows two young boys standing with their arms around each other. They are both wearing brown jackets, jeans and a blue shirt.Our eldest son, Chris, is 22 and was diagnosed as Type 3 when he was 8. His brother, Alex is 3 years younger and does not have SMA.

Chris and Alex have always been very, very close – to the extent I cannot recall any serious arguments between them ever. Alex has always wanted to do what Chris did, watch what Chris watches etc. But they are both very laid-back characters who would definitely stick up for each other but not worry a great deal about what may come along.

As such we have not ever had the feeling that Alex would need additional support and I cannot recall any such department / organisation ever being mentioned.

Image shows two young boys smiling and with their arms round each other.For us it has been a general awareness that Alex has missed out on certain experiences and activities because of his closeness to Chris and the allowances we make for what Chris can and cannot do. Alex has never shown any interest in learning to ride a bike because Chris cannot. Holidays tended to be a week away in the UK and what we did on holiday was in part regulated by what Chris could cope with. Alex has certainly never showed resentment over this, but it did mean that recently we have arranged a couple of holidays for Alex with either myself or my wife to enable him to do things he could not do with Chris.

As part of ensuring Alex was a little more independent of his brother, we did seek out a sport he could play – a non-contact version of american football – which he became very good at. Even then, since Chris took an interest in helping his brother, Chris ending up being a very good coach.

Image shows two teenagers standing next to each wearing sports kit and medals, and both holding silver prizes.Alex does many little and not so little things for Chris – getting him things, picking him up, lifting him up steps etc. He has made family holidays much easier because of all he does to help. I have spoken to him and he has no bitterness, resentment or annoyance at this at all.

In summary for us the issues have been recognising the areas where Alex may miss out, trying to ensure we do something about these and recognising the huge amount he does to help us and his brother. I am not sure how much this will help families, but I hope it does in some small way.

First published: 12th August 2019