In advance of World Fragile X Day on 22 July, Duckyls Farm is highlighting this little known genetic condition, which affects around 1 in 4000 males and 1 in 6000 females in the UK.
The less well known Fragile X Syndrome is a genetic condition that affects both boys and girls, although boys are often more severely affected. It can cause a range of issues with language, emotions, attention, behaviour and social interaction and on 22 July, World Fragile X Day celebrates families impacted by Fragile X Syndrome and highlights advancements in research to find effective treatments and ultimately a cure.
Duckyls Farm, near East Grinstead supports two residents, James and Simon, who are united not only by their friendship but by their early childhood diagnosis of Fragile X Syndrome. Set in 100 acres, Duckyls Farm provides a calming location for the men whose condition means they can be uncomfortable in loud busy environments.
James 44 and Simon 38 have a wide range of Fragile X Syndrome characteristics which include having a 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 and also have difficulty with eye contact and struggle with some social activities.
Karen Tolton, Manager, Duckyls Farm said, “The peace and tranquillity of 100 acre Duckyls Farm offers a calming, rural space which is essential to ensure James and Simon live in a quiet environment without too many people around them. They are high functioning and have a degree of independence but need extra support and guidance in carrying out daily activities.
“A condition that is not as well known or talked about, Fragile X Syndrome can be very similar to autism, yet can present very differently in different people and no two people are the same. Days like World Fragile X Day are really important to highlight the different conditions involving challenges to social interaction, speech and nonverbal communication, and repetitive behaviour within the Autism spectrum. There are several complex developmental conditions under this umbrella which include Asperger’s syndrome, Fragile X Syndrome and Rett Syndrome. We are fortunate at Duckyls Farm to have a team with the knowledge and experience of various conditions including Fragile X Syndrome who are able to offer a person centered approach to give the best support to James and Simon and their families.”
Caroline, Simon’s mother said, “Simon had some very high and low moments throughout his early life. It is superb to see how much his behaviour has calmed down since living at Duckyls Farm. He struggles with change, and the Duckyls Farm care team 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 matches. He also loves animals and living in the beautiful surroundings of Duckyls Farm gives him the opportunity to help look after and learn about the animals that also live there.”
Karen Continued, “James and Simon are sensitive to other peoples’ emotions, are extremely likeable and both have a great sense of humour. Sometimes they can struggle with concentration, but our team is always there to assist them with their daily routines. They both thoroughly enjoy our weekly programme of activities and trips out. James and Simon are a much loved and valued part of the Duckyls Farm community and Fragile X Syndrome is no barrier to them enjoying life to the full and participating in their communities with the support we provide.’’
Simon became a resident in 2008, and James moved from Scotland to Duckyls Farm in 2014. The care centre for adults with learning disabilities, run by the charity Diagrama Foundation, currently has eight residents, although expansion plans are in place to increase the number of residents.
To find out more about the care Ducklys Farm offers for Fragile X Syndrome and other conditions visit, www.diagramafoundation.org.uk/duckyls-farm
What is Fragile X Syndrome?
Someone with Fragile X Syndrome might have a short attention span, be easily distracted, act impulsively, feel restless, be very active, and have heightened senses, but no two people are the same.
Many people with Fragile X Syndrome might act in a way that is similar to someone with autism, including avoiding eye contact, feeling anxious in social situations, extreme shyness, enjoying familiar routines and hand flapping or hand biting.
People with Fragile X Syndrome share some physical features, including a long narrow face with prominent jaw bones and ears. These features are difficult to see in young children, which is why diagnosis can sometimes be delayed.
About World Fragile X Day
World Fragile X Day is held on 22 July and celebrates families impacted by Fragile X and highlights advancements of research to find effective treatments and ultimately a cure. FRAXA launched World Fragile X Day in 2021.
About Diagrama Foundation
Diagrama Foundation is a Kent based charity that supports vulnerable children, young people, and adults to live their best life.
Diagrama has a Supported Living Service across Bromley, three homes for adults with learning disabilities in Orpington, an eight-bed care home for adults with learning disabilities in West Sussex a fifty-bed care home for the elderly with nursing and dementia needs in Essex, and a fostering and adoption service in the southeast.
- The Supported Living Service, cares for 35 adults with learning disabilities, in nine homes across Bromley helping them to develop skills and confidence to live in their own house either on their own or with others.
- At Cabrini House in Orpington the charity promotes the development of core skills for 23 adults with learning disabilities so that they can lead independent lives integrated within their community.
- Duckyls Farm in West Sussex, a care home for eight residents with learning disabilities, joined the charity care provider in February 2023.
- The team at their nursing and dementia care home, Edensor Care Centre in Clacton on Sea, support vulnerable residents to live life to the full.
- Diagrama’s adoption and fostering service cares for children in South London, Kent, Sussex, and Surrey.
Many vulnerable children and adults don’t get the support they need to develop their true potential, but the Diagrama team know that when someone has time and belief invested in them, they come alive, because that investment has made them feel valued and worthy.