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 it, enjoy every moment but then the Prader-Willi mom kicked in and suggested they check with mom first.
As I stood there talking to a friend, I found myself explaining how this type of event was so hard when Jessica was growing up. She was just the cutest and could bat her lovely brown eyes at people, and they wanted to feed her anything she wanted. Needless to say, the PWS mom (or dad) had to follow close behind and say, “Please check with me first before feeding her,” and then might end up educating them on what PWS was.
You see, for Jessica, as some of you may already know if you’ve read my book, was born with poor sucking skills and poor muscle tone and the doctors didn’t know if she would ever walk or talk. At birth, the doctors knew there was an issue and suspected Prader-Willi Syndrome, but it wasn’t confirmed till she was 4 years old, through a genetic chromosome test. She was missing a link in Chromosome15, affecting the part of the brain that tells our kids they are full. They are always hungry and will eat excessively, possibly food and non-food items. In 1981, she was 1 of 600 known cases. Today, PWS affects 1 in 10,000 to 1 in 30,000. There are many other things that are present with this syndrome, like intellectual disabilities and health issues, as well as growth issues (they tend to have small hands and feet and be short unless given growth hormone).
Fortunately for us, Jessica was presumed to have this almost at birth, and we kept a close eye on her. At 1st, it was hard to get her to eat, but once past infancy, the insatiable appetite started and we had to limit her intake, as she only needed half the calories others her age needed. We often looked like the ‘mean’ parents because we had to limit her or set boundaries where people didn’t respect them.
Our Jessica is now 41 and has done amazing things! I wish I could go back to encourage my 20-year-old self that it would be a ride but one so worth taking! Jessica is very high functioning and is the best puzzle maker, card maker, and hugger around. She has learned to monitor her diet and has stayed very healthy. To know her is to love her!
SHEILA BOUCHARD 