For various reasons, people with PWS used to die very early on in life, with a life expectancy perhaps to age 20. These days, because of advances in research, medical treatments, lifestyle and health changes, and more, life expectancy can be normal if weight is controlled.
That said, far too many people with PWS die way too early. This can be from a PWS food forage that leads to stomach rupture, stomach rupture from an acute GI illness, uncontrolled respiratory illness, untreated/uncontrolled sleep apnea, and obesity-related causes like heart failure. There is also a higher-than-normal risk of sudden unexplained death.
Every PWS parent thinks about this. There are nights when I'm afraid to go to sleep because I'm worried Dean won't be there in the morning. I cannot imagine my life without him. Sometimes I'm really thankful for the bipap because if he stopped breathing, it would alarm. I've slept in his bed more than once just to be near him. Dean usually wakes up around 5:30 am, and although that's really, really early, it makes my heart smile to hear him up and about in his room chattering away.
A boy with PWS who was still a child passed away recently. Here is a status update from Vanessa Child, a 24-year-old adult with PWS. I think what she wrote speaks volumes:
I Am very Saddened to hear that an 8 year old soldier with PWS has lost his Battle This week. Awareness Month has ended on a tragic Note.
the only good thing that comes from this Is Your Not HUNGRY anymore.
No More PWS Monster. - R.I.P. Coryion Robertson
Fly High < 3 You are Finally "FULL" < 3
He Will Wipe Away Every Tear…
15 hours ago