Welcome to Chloe's Page

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Chloe's Story

Life with sweet little Chloe Hawkins began on Valentine's Day in 2008. While we couldn't have asked for a better gift from Cupid, Chloe's arrival turned out to be fraught with worry and uncertainty. At first we thought she was perfectly healthy, just a little on the small side. But when Chloe continued to show no interest in eating and slept 24 hours a day, we knew something was up. After two excruciating weeks of tests and sleepless nights, we got a diagnosis - which was both a total relief and a punch in the gut. Chloe was born with a rare, non-hereditary genetic disorder called Prader-Willi Syndrome (PWS). At the time we had never heard of it and were too shocked and upset to take much information in. Now, 17 months later, we know so much about PWS that we could talk about it for hours, literally!

Life with PWS

PWS is considered one of the most complex genetic conditions. It's a spectrum disorder with an array of potential symptoms that affect individuals to differing degrees, including low muscle tone, feeding difficulties, respiratory problems, delayed gross and fine motor development, speech delay, cognitive impairment and, most notably, an insatiable appetite that can lead to life threatening obesity.

For Chloe this has meant struggling day after day to feed from a bottle, doing months and months of physiotherapy to gain the muscle strength necessary to hold up her head and sit independently, getting oxygen at night to overcome sleep apnea...and no doubt the list will continue to grow.

But despite her challenges, Chloe has already achieved so much and continues to inspire us with her unflagging spunk and determination. With each passing day we feel more and more motivated to find as many answers as we can to the PWS puzzle.

Walk, run or simply give cold hard cash for Chloe!

Which (finally!) brings us to the One Small Step walk/run fundraiser organized by the Foundation for Prader-Willi Research Canada (FPWR) which we'll be participating in on August 16, 2009. FPWR is an amazing organization that puts every penny it raises into funding research to eliminate the challenges of PWS. We and Chloe have already benefitted enormously from the FPWR and several of the studies it has funded to date.

Each new research project the FPWR is able to fund is one more chance that Chloe and many other kids like her will be able to live life a little more fully.

So, please consider sponsoring us for the walk and remember that no amount is too small - every bit counts! Or, better yet, join us for the walk/run on Aug. 16th and do some fundraising of your own (see website for pledge forms).

Thanks for your suppoprt!

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