Adeline’s Story

Adeline was born in 1994. She was later diagnosed with having Prader-Willi Syndrome (PWS). We did not want to accept that our lovable baby girl was going to grow up any differently from her older siblings.  We believed that Adeline can overcome the limitations of PWS, so Mum devoted her full time to work on improving her hypotonia and to enable her to achieve the appropriate levels of literacy and numeracy skills for normal schooling. Mum initiated her into participating in regular childhood physiotherapy and aquatic activities and allowing controlled access to food to maintain her weight. Adeline also attended regular physical engagement, reading lessons, arts and handicraft programs.   Adeline was able to cope with her early years’ schooling, minimised her skin picking and did not display much behavioural concerns.

However, as Adeline grew older due to her intellectual impairment and behavioural disorder she trailed her peers academically and socially in the normal school environment. Growing up with PWS is inherently hard and it becomes extremely difficult in a less informed and unsupported environment.  When Adeline was in Grade 6, we made the decision to take her out of normal schooling system and enrolled her into a special need school to enable her to benefit from the supported environment. In the smaller and supported special school environment, Adeline became a more confident and happy person.  However, the safety of the special school environment came to end following the completion of her STEP year at age 18.

Adeline is now a young adult with PWS having to face the reality of the adult world. Like any young adults, Adeline has dreams of living independently from her parents, getting a job and achieving her goals. However, Adeline is unprepared for unsupervised living and is a very vulnerable person. She needs supervised assess to foods, dietary controls and the consistent routine and a structure that a PWS community can understand.  Importantly, she needs to be surrounded by people who can support her difficulty of being constantly hungry and her vulnerability if tempted with offers of food.

We know that the best chance for Adeline to be able to participate in the community and to reach her potential, she will need a life-long support structure to cope.  The disruptive nature of the PWS associated complex behavioural issue and hyperphagia makes it challenging. We believe that the mission which the PWBLF sets out to achieve will provide her and other young PWS adults the pathway to a better life and to realise their dreams.