Jaxon was born May 19 2012 to his excited family of mom, dad and three older sisters, a little boy to complete our circle. Things did not go quite as planned and we were about to embark on the unknown journey of Prader Willi Syndrome.
When Jaxon was born he did not cry or really move much at all. He was peaceful and calm and did not complain for over a year. He had very little energy and could barely stay awake to even drink a bottle.
He was tube fed for a month and was diagnosed with Prader Willi Syndrome at 19 days old.
Some symptoms that are associated with PWS include low muscle tone, low energy level and slow metabolism, cognitive delays, poor temperature regulation but most notable is an insatiable appetite and fascination with food. Jaxon will never feel full after eating and this will cause him to struggle daily.
We have been fortunate enough to encounter so much support both from the PWS community and through Grandview Children's Centre, we have been provided with the tools needed to help our son Jaxon reach his full potential. Our family feels we are part of an elite team that truly wants Jaxon to succeed. We are surrounded by people who make little miracles happen every day, this is so inspiring and we are so thankful.
- written by Jaxon's Mom, Angie