Read Taylor’s PWS Journey – Gretton House
Leaving home and moving into a residential care setting was a difficult first step – but it soon became a journey that would positively change her life.
Taylor, aged 25, was diagnosed with Prader-Willi Syndrome (PWS) shortly after she was born and despite the challenges the condition presented, her determination to live a full and active life has never faltered. PWS is a rare genetic condition affecting one in 15,000 births. It is characterised by a lack of satiety cues which can give rise to life threatening obesity if not properly managed. Individuals with PWS can also experience a range of physical, learning and behavioural challenges.
Taylor comes from a loving caring and committed family, who were as determined as she was, to ensure she had every opportunity to live a full life. As she was growing up, her parents felt that many of the challenges she experienced were the result of a lack of understanding of the condition. The protective family would often express their concerns about the treatment she received from others, but Taylor refused to be affected by other people’s perceptions and continued to pursue her goals.
The various educational settings she went to were slow to understand her cognitive and educational needs, however Taylor was determined to remain within a mainstream elementary school. She then went on to do very well at a secondary school for individuals with moderate learning difficulties before moving on to a mainstream college to continue her study.
While many individuals with PWS have physical challenges that make exercise more difficult, Taylor excelled at sport. She played squash and netball, rode horses and became an excellent swimmer and runner, receiving a special Award from the Small Heath and Solihull Athletics Club for her determination and support of her fellow athletes.
She raised money for the PWSA UK, by completing no less than five London 10K events and in 2012, was nominated to carry the Olympic Torch – a proud moment for Taylor and her family who said, “if ever there was a candidate deserving of this accolade it was Taylor!”
Taylor’s father said, “Taylor was a truly gifted child, so unassuming and modest, not realising her own strength of character – she became our role model.”
As Taylor reached adulthood, the family realised it was becoming increasingly more difficult for them to provide her with the quality of life she deserved. They struggled to help her as she battled her insatiable appetite and her frustration manifested into outbursts she fought hard to control. Her health began to decline, and she developed Type 2 diabetes and mobility issues. Her quality of life suffered further due to her increasing isolation and frustration.
Recognising that Taylor deserved all-encompassing and specialist support, the family suggested that they could support her to explore the possibility of living at Gretton House, a specialist PWS service in Northamptonshire, with over 35 years’ experience of supporting individuals with the condition. At first, Taylor was very reluctant, however after further discussion she decided to attend an initial meeting with the team at Gretton House.
Taylor’s father said, “Throughout her life, we have nurtured and motivated Taylor to never give up. But another undeniable strength of her character was her ability to understand and accept that she now needed more help and support.”
At the meeting, the family met with Service Manager, Sharon McRobbie and PWS Liaison Officer Myles Kelly, both of whom have worked with individuals with PWS at Gretton for almost 30 years.
“The meeting started with some emotional resistance from Taylor, but the team were very understanding and gave her plenty of reassurance and respect. Taylor then felt at ease and began to talk openly,” said Taylor’s father.
“This was a turning point for Taylor. We knew it had to be her decision and as the meeting progressed she started to see, as we did, that she could be supported with her health and emotional issues by a team who had specialist knowledge of her condition and could provide her with the unique support she required. “A team who would listen and understand her, be patient and non-judgmental, Taylor’s father added.
Following the meeting, Sharon and the team planned a transition period for Taylor over the course of a month which involved day visits and alternate overnight visits.
“The transition period was invaluable as it gently eased me into the way of life at Gretton House” said Taylor. “After this I felt much more at ease and was really excited about starting my journey living at Gretton House.”
After moving in, Taylor felt she had quickly become a different person. “Living at home, I had problems managing my emotions and my rapid weight gain had become difficult to control.”
“At my first weigh in I weighed 19st 13lb and my weight quickly started to drop as the team helped me to become a more healthy, confident, positive and happy person.”
The insatiable appetite experienced by those with PWS is something that is carefully managed by the team at Gretton who understand the anxieties and health issues this can cause and devise healthy menus that aid good nutrition and healthy weight loss in a carefully managed way.
The team identified that Taylor needed a routine and structure to her day with lots of dedicated person-centred support to help her achieve her goals. In addition, through her person-centred support plan Taylor enjoyed a broad range of activities to enrich her health and wellbeing.
She has now found a new lease of life, enjoying bowling, swimming, shopping trips and visiting the local country parks. She has also enjoyed a special outing with her fiancé to go-karting and has made many new friends who she enjoys passing the time with and having fun whilst doing activities.
At her first review with the team and her social worker, Taylor was able to talk through the amazing outcomes she felt she had achieved at Gretton House. As well as losing weight, she felt her anxiety was reduced as the staff really listen to her and understand her triggers and that the person-centred approach helped her to consider and think through different ways that things could be achieved.
“This has been such a positive change for me and it could not have happened without the wonderful team at Gretton who have worked hard to find a structure and support plan that works for me,” said Taylor.
“The transition has been so carefully and sensitively carried out and her life has changed beyond anything I could have envisaged. I can’t praise Gretton House enough for the difference it has made to my daughter in such a short space of time,” said Taylor’s mum.
“Taylor only wants to come home for visits now as Gretton House is now her Home,” adds Taylor’s father.