Here we are, forty-three years into this Prader-Willi Syndrome (PWS) journey. I sometimes forget my daughter Jessica has it, until she gets ‘stuck’, which we recently experienced, and then it brings me back. For those unfamiliar with PWS, the beginning of a child’s life who has this rare syndrome tends to be a real struggle. … More Prader-Willi Syndrome & “Getting Stuck”
One day this week, I found myself in the same hospital I unexpectedly visited three weeks ago. You see, I have a daughter with Prader-Willi Syndrome, which is a rare genetic disorder. When she was diagnosed in 1985, she was 1 of 600 known cases. Now, according to Google, there are something like 350,000 people … More SURRENDER – PEACE
Wow! I can’t believe it has been a year since my Book Baby was published! And what is even wilder is that I am currently in the studio, working on the audible book for it – Woohoo! This book, so vulnerably giving me my voice back. This book, sharing with the world, my faith journey … More One Year “Book-Baby” Anniversary!
I came across this picture recently and had a flood of memories! This beautiful girl here – my miracle kid… The one they said might never walk or talk… The one who had to be taught limb by limb to crawl – 1st, you move the right elbow/arm, then the left elbow/arm, followed by the … More Senior Prom 2002:Prader-Willi Syndrome
Since May is Prader-Willi Awareness Month, I am writing in honor of my daughter Jessica. The other day I was at a Memorial Day church picnic, and one of the little ones had come over to the dessert table, asking about having this scrumptious sugary donut. The softie in me wanted to say, go for … More May – Prader-Willi Awareness Month 2023
SHEILA BOUCHARD 