Living life to the full with Fragile X Syndrome

20 Jul 2023

James and Simon are united not only by their friendship, and both being residents of Duckyls Farm, but also their diagnosis of Fragile X Syndrome in childhood. Whilst the genetic condition affects boys and girls, boys are often more severely affected. It can cause a range of issues with language, emotions, attention behaviour and social interaction. Common behavioural features of Fragile X include short attention span, distractibility, impulsiveness, restlessness, over activity and sensory problems.

James and Simon have previously been uncomfortable in social situations, loud environments and don’t like confrontation. They both have difficulty with eye contact and struggle with some social activities. James originally lived in Scotland and moved to Sussex in 2014, when his parents took over the running of Duckyls Farm, prior to it being in Diagrama Foundation’s ownership. James’ father thought the 100 acre site was the perfect back drop to support adults with learning disabilities, whilst also operating as a working farm. Simon joined Duckyls Farm after his family got to know James’s father through the Fragile X community and joining the Fragile X Society.

The peace and tranquillity of Duckyls Farm and its stunning 100 acres offers a calming, rural space which is essential to ensure James and Simon live in a quiet and supportive environment. Our team support James and Simon in much the same way as our other residents – by taking a person-centred approach to their care needs. They are both high functioning and have a degree of independence, but need extra support and guidance in carrying out daily activities. Staff ensure they can manage social activities in ways to suit them - which are key to integrating our residents. Fragile X can be very similar to autism, yet presents very differently in people. Our experience and knowledge of Fragile X ensures that our team have the skillsets to offer the right support to James and Simon.

Caroline, Simon’s mother told us: “Simon has had some very up and down moments throughout his early life – and he’s really calmed down since being at Duckyls. Simon struggles with change, and his carers have been wonderful in helping him manage his daily routine. He has even gained the confidence to join Brighton and Hove Albion FC as a season ticket holder - and regularly goes to see them play. He is devoted to football, and his trips to matches form a big part of his routine. As he’s been doing this for a long time, he now feels more comfortable in this crowded environment. Simon also loves animals and being at Duckyls gives him the opportunity to help look after and learn about the animals on the farm.”

Duckyls Farm Service Manager, Karen Tolton says: “James and Simon are sensitive to other peoples’ emotions, they are extremely likeable and both have a great sense of humour. Sometimes they can struggle with concentration, but our team are always there to assist them with their daily routines and they both enjoy trips out and our weekly programme of activities. James and Simon are a much loved and valued part of the Duckyls community. Fragile X is certainly no barrier to them participating in their communities with the support provided and leading enjoyable and fulfilling lives.’’

Photo: James (far left) and Simon (second from right, kneeling)

To find out more about Fragile X Syndrome - visit: