SASKATOON – Like many others in Saskatoon, the Olauson family is preparing Thanksgiving Day dinner on Monday but it comes with challenges.
Their oldest daughter, 5-year-old Anastasia, has Prader-Willi Syndrome (PWS), a genetic spectrum disorder characterized by an insatiable hunger.
“It doesn’t matter how much they eat, they’re always hungry” said Jennifer, the child’s mother.
This results in life-threatening obesity, tantrums, meltdowns and obsessive compulsive tendencies. In extreme cases, some have ruptured their stomachs and literally eaten themselves to death.
Very few people with the disorder can live alone. They usually require either a family member or health care provider to hold them accountable for their diet.
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The disorder also causes low muscle tone and varying levels of developmental and intellectual delays, a real challenge for parents.
“At her first birthday she was just learning to sit. By her second birthday she was learning to crawl and by her third birthday she’d just taken her first steps” said Jennifer.
Currently, the only treatment is growth hormone therapy which Anastasia isn’t on yet.
“It has been proven to increase muscle mass, improve muscle tone and even cognitive abilities, IQ’s have gone up… even height” said Glen, the father.
Health Canada doesn’t recognize the hormone as a treatment for PWS, so the drug is not covered.
This is just one of the reasons the family is trying to spread awareness about the generally unknown disorder. The other reason is to educate the public for a better understanding in schools and daycares.
The Olauson family feels they still have plenty to be thankful for over the holidays.
“We’re thankful she’s in our life and how wonderful she’s doing” said Jennifer.
In an attempt to raise money and awareness, walks are hosted annually across the country. Sixty people attended a fundraiser in Saskatoon’s Victoria Park on Saturday, raising $3,000.
The family hasn’t met any similar-aged children with PWS and encourages anyone affected to get in touch with them via emailing info@saskpws.ca.
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