News, views, thoughts from the International PWS Organisation.
Monday, May 29, 2017
Greetings from Denmark
Mit navn er Jytte Helgogaard, og jeg bor i Danmark.
My name is Jytte Helgogaard and I live in Denmark.
My daughter Cecilie is 28 years old and was diagnosed with Prader-Willi Syndrome at the age of 8 months. She attended special schools during her childhood and youth, and she moved away from home when she was 20 years old. She moved to Solvang, a residential home for persons with PWS situated on a small island called Fejoe – 3 hours by car away from us and 1 hour by ferry away from the North of Germany. Here she lives together with 8 adults with PWS and she has her own apartment consisting of a living room, a bedroom, a bathroom and a tea kitchen with a total of about 60 square meters.
(Picture: Solvang, Fejoe – the apartments)
Besides the apartments, Solvang consists of a house with a big dining room where all the meals are served. Solvang also has its own stables with horses and a farm shop where some of the residents restore old items of furniture to be sold in the shop. Cecilie has her own horse in the stable and her daily life includes horse riding, caring for the horses and other work in the stable along with field work. Each year they all go to a special music festival, abroad, activity holidays as well as the PWS summer camp arranged by the Danish Association of PWS.
Once a month Cecilie visits us for a weekend. She goes by taxa thus she doesn’t have to travel by herself. That goes for holidays as well.
Without doubt, the biggest challenges we have experienced during Cecilie’s life have been her school offers which haven’t been specifically aimed towards PWS. We have always had positive experiences with the health care system as well as with the social welfare system which have had a very good understanding of the specific problems and needs related to PWS.
At Solvang Cecilie has a wonderful life doing things that interest her (horses). She is always happy, her weight is fine and she has an active social life with the persons she lives with.
My piece of advice and recommendations for families with children and young persons with PWS will be that – when adult or about to move away from home – they should live in a residential home just for PWS. It is so important that people with PWS get the opportunity to live in a home with staff that has a thorough understanding of PWS including a daily structure, good and healthy day programs and last, but not least control of the food.