A Story From Our Community
Prader-Willi Syndrome. The first time we heard these words was on Bennett’s fifth day in the NICU. I was alone (Covid rules) and Bennett had just undergone two and a half hours of blood draws. His Geneticist came back to see me, and asked if they could also test Bennett for PWS. I agreed. We found out later Bennett was flagged by one of the nurses for having PWS as he showed many of the same telltale signs as another baby under their care that had recently been diagnosed.
After our brief discussion, I went down the Google rabbit hole (bad idea). My heart broke into a million pieces in that hospital room. The pictures, the symptoms, the outcome were all doom and gloom. How could a baby with no genetic-predisposition and cared for so greatly in utero be subject such a terrible fate?
Then Bennett perked up, and began improving. We were moved out of the NICU and into paediatrics. By the time we went home, I was convinced Bennett did not have PWS. Three days later, we got the call from Bennett’s Geneticist. I knew before I picked up the phone what she was going to tell us. Bennett has Prader-Willi Syndrome. To this day I don’t know how I put one foot in front of the other to pick up the dinner we had ordered, have a short conversation with our neighbour and made it home in one piece. Our hopes, dreams, and the future we imagined for Bennett were shattered.
Until they weren’t. Here’s the thing, I teach dance for a living (and my husband is a high school teacher). I have never given up on a child in my life, and I had no intention of starting now. We found organizations like OPWSA and FPWR Canada to guide us, and set up the support system Bennett needs to thrive. We work with him every day, and look for new tips and tricks for our toolbox.
Fast forward 11 months, and Bennett is thriving. He is taking all of his meals orally (milk and finger foods), has amazing fine motor skills, and recently tested in the “normal range” for 9-12 month olds in speech and language development. He is rolling all over the house, sitting independently and standing with assistance. While gross motor skills are still a challenge, we are getting there.
More than anything, Bennett is a determined, independent thinking little boy. He loves playing with his big brother, the swings at the park, and his ride-on car. Bennett also loves reading books, turning the pages, and anything with wheels. He is a lot like his big brother in that way.
Prader-Willi Syndrome is a challenge, but will not define Bennett or his life. We will take each day as it comes and support Bennett in becoming the best version of himself, whatever that may be.