Note from Siobhan and Stephen Lennon-Patience

We are Siobhan and Stephen Lennon-Patience and have lived in Minehead for the last ten years. October is an important month for us as it marks Dwarfism Awareness Month and it is also when the Restricted Growth Association holds its annual convention. Thanks to Minehead Rotary we have been able to attend this important event for the first time. There are over 400 distinct types of restricted growth (dwarfism) conditions and this time last year our son was diagnosed with achondroplasia which is the most common form of these conditions. 80% of people with dwarfism have average height parents just like our son has. Being told that your child has a life long and potentially disabling condition is of course a shock at first, so organisations such as the RGA are an absolute life line to families like us. They have been a tremendous source of support, advice and friendship. Our son enjoys a very full life in Minehead and he will enjoy attending school here in the future alongside his peer group friends he has made through various baby and toddler groups. However, it is also so important for him to have opportunities to meet other children with similar conditions and experiences as himself. Attending conventions such as the one held by the RGA will enable him to build life long friendships and is a great source of confidence building. For the children attending this convention there is plenty of fun on offer, such as fancy dress, soft play, climbing wall, baby sensory classes and a disco. There is also a serious side to this event too, for example a chance for parents to see a wide range of adaptions for the home and school environment that may help our children with some of the day to day problems they may face due to their reduced stature. We can also attend workshops relating to the many and complex health issues that can form part of restricted growth conditions, support groups sessions for parents as well as discussions about access to useful benefits, grants or services. We really want to thank Minehead Rotary for enabling us to attend this convention, it has meant a lot to us as it is a cost we would have struggled to meet.

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