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Beyond Home: Our Story
This is my blog where I write about the challenges and successes of moving a child with complex special needs into a residential placement at age 13. Greta, my first-born of two children, is affectionate, outgoing and loves animals. She also has a genetic condition called Prader Willi Syndrome (PWS).
About PWS
In infancy, it is characterized by weak muscle tone, feeding difficulties and delayed development. Around toddler-hood, individuals develop an insatiable appetite (hyperphagia) which, in our home, meant locking away all food, including garbage and compost. Food access is a safety issue that requires 24-hour-a-day vigilance.
People with PWS typically also have cognitive impairment and behavioural issues. It is a serious, life-long illness with no cure.
Effects on the family
Studies show that family members of people with PWS experience some of the highest levels of stress compared to those dealing with other syndromes and genetic disorders.
In addition:
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Parents experience higher-than-average levels of depression, feelings of isolation, anger and worry.
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92% of siblings had moderate to severe symptoms of PTSD.
Learn more at pwsausa.org and fpwr.ca.
