Monday, June 22, 2009

In between sharing about the journey that I have been on let me share an exciting story from some friends of mine. They are the Fore Family and they live in the US and I have been in touch with Stephanie the mom for a few years now. They have a son Brady who has Angelman Syndrome - like Elijah.

The full story can be read at Brady's blog - or at

In short the Fore family were on holiday - it had been raining - Brady loving water when it stopped couldn't resist playing in the puddles - que the kids of Marcel Cairo who met Brady in the puddle and both family enjoyed a time of puddle splashing together, the parents met and Brady's parent shared something about Angelman Syndrome.

Marcel shares "

Though our time with Brady and his family was short, it was one of those life-changing moments you hear about on Oprah, and maybe not for the reasons you would assume. Sure, Brady and his syndrome elicit an instant empathy, but I had an epiphany, not just empathy.

The epiphany I experienced was not instant, nor was it sought. It basically crept up on me, and then on my wife, Leigh. When we left the campground in Florida, there were no long protracted goodbyes, no fanfare, no exchange of phone numbers, no promises, only a simple, “look us up on the web wen you get home and I hope you stay in touch,” from Brady’s mom, Stephanie.

Two weeks later, when I started making the movie of our camping trip and saw the footage of my kids playing with Brady, all those joyous feelings returned, and that’s when everything just came together in my head.

Camping isn’t just fun, it’s therapeutic. For Angelman kids and their families, camping is also an escape from the limitations of the syndrome. Angelman kids love to laugh, make noise, throw things, horse around, play in water and socialize. Parents of Angelman kids want to give their angels the freedom to do all those things daily, but without wrecking the whole house or turning the neighborhood upside down."

And from this "Big Happy Tent" was borne - check out this work - a foundation to help AS families go camping.

As I reflected on this wonderful encounter - I recognised an ability our kids have to enjoy the simple things and take delight in sharing the simple things with others I am learning to take time to enjoy the simple things.

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