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4Addy

Welcome to my Cure Angelman NOW Miles for Smiles fundraising page!

We are about a month out from our triathlon! Aiden and I are so excited for the big day, April 23rd, and we're thrilled that our friends Kerri and Zach will be joining us to raise awareness about Angelman Syndome and to more importantly, raise funds to help Addy's future and all AS kids.

Training has been ongoing for the past couple of months, some days it’s two workouts a day, as I’m nervous about the three different sports all in one race :) The days that I run, I think back on when we wondered if Addy would ever learn to walk, then I visualize her crossing the finish line as she finished her first 1k race two years ago.  When I bike, I picture Addy riding right beside me without training wheels.  And my biggest challenge is the swimming, but as I push through,  I think of the Dr.'s saying she may never learn to swim and how she proved them wrong by doing it.  She's exceeded all the Dr.'s expectations! 

Aiden has been enjoying his training as well, now that it’s a little warmer we can get him in the pool. He does a lot of his running at PE, as they run many laps! :) And we’ve also biked a few times.  He is very excited to raise money in hopes of eliminating some challenges for Addy! And as he says many times, maybe one day Addy will say his name!

I recently read a posting that a fellow AS mom wrote to another mom who was having a tough day. Her comments really resonated with me. Her words  “For some reason God chose us, we are doing his work. These kids with AS did not ask for this, neither did we, but we were chosen.  Even when we are exhausted, she understands your love for her and recognizes your exhaustion.  We need to look for that special look that our kids gives and recognize the gratitude and absolute pure love there is for us” And this is so true... Addy KNOWS what is going on and when you need that hug or when she presses that “I love you” button on her AAC device (right at the most appropriate moment) it’s an amazing gift, an absolute pure love and gratitude.  So I’m just a mom trying to help our daughter the way I know how …and when I am too exhausted to workout at 5am or do a second work out after dropping the kids off, I think this is my way to help make a difference.  My challenge is minimal to what she faces daily! Her smiles stifle my fears of her future but I know I must help in any way I can to make sure her future is the best it can be.

So Aiden, myself, Kerri and Zach are not waiting for her calvary, but we ARE her calvary……please join us! HOPE is the reason to keep going!  We are never, ever giving up! 

FAST (Foundation for Angelman Syndrome Therapeutics) is committed to bringing life-changing treatments to clinical trial within two years, but we need your help. We are asking everyone to join us in the Cure Angelman Now initiative because together, we CAN do this. Our time is now and every single dollar counts in getting us closer to our goal.

Thank you for always loving and supporting our family!

With much love, 

Kathleen and Aiden

Click SPONSOR ME to donate to my efforts or click Register to create your own site and join me in raising funds for Cure Angelman NOW!

717%
  • Goal $1,000.00
  • Raised $7,172.00
Top Donations
  • anna g hayes - $1,000.00
  • Francis Hayes - $1,000.00
  • The Dellamano Family - $500.00
  • Victor Gabrisa Canubida - $500.00
  • SOPHIE HAYES - $386.00
Sponsors
Donor Date Amount Message
Jenny Todesco 4/26/2017 $25.00 So proud of you Aiden! Great job!!
JJ Minardi and Family 4/24/2017 $75.00 So proud of you Aiden, Kathleen and the Hayes Family Calvary!!! You AMAZE us!
The Joelson Family 4/23/2017 $250.00 Go get it!
Kris Quan 4/23/2017 $50.00 We love you Addy!
SOPHIE HAYES 4/23/2017 $386.00 SOPHIE IS ROOTING FOR ADDY "WOOF WOOF"
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