A note about Prader-Willi

As I mentioned before, children born with Prader-Willi Syndrome (PWS) have very low muscle tone. Many times the child’s muscles are so weak that he cannot even suck from a bottle or swallow solid foods. Also, many children with PWS require the use of supplemental oxygen to treat apnea. This is the case with Luke.

In addition to the low muscle tone, children with PWS also suffer from chronic hunger, and must learn self-control and healthy eating habits in order to prevent morbid obesity. Many families have to put locks on the pantry and refrigerator, and keep strict diet and mealtimes.

Finally, children with PWS also suffer from frustration and tantrums due to their insatiable hunger. There are various other physical and mental obstacles associated with PWS, but the three above are the main problems.

Various people have approached us with words of encouragement, and many have called us “courageous”. A few have asked if we’re scared of what lies ahead. Maybe I am naive or crazy, but I don’t worry much about the future. I firmly believe that God has entrusted us with the task of caring for these two children, so what place do I have to worry? Scripture offers a slew of advice against worrying, so I put my trust in God that he will guide our path.

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2 thoughts on “A note about Prader-Willi

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  2. Pingback: True beauty | Truth & Charity The Intersection of Faith & Life

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