That Was Then

Yesterday, March 10th, marked 5 years since we received the phone call that would  change our lives forever.  It was the day Prader-Willi Syndrome entered into our lives.  And while it was devastating news, that was then and this is now.  Today I look back at the past 5 years and am so proud of our family that has embraced every single one of Siena’s idiosyncrasies.  I am thankful for our friends who have helped us raise awareness for PWS.  I am forever grateful to the doctors and teachers/therapists who have helped Siena get to where she is today. And above all else, I am amazed and totally in love with our Sweet Siena.

Tomorrow, March 12th, we will celebrate Siena’s 6th Birthday.  We will celebrate this amazing girl who has made us all be a better, stronger version of ourselves.

(Getting on bus for school this morning)


So many of you have supported Siena and our family by coming to her walk or other events we have held throughout the years and we are so thankful to you all.

If you are wondering how you can get involved, right now we are supporting the Foundation for Prader-Willi Research  and their Philadelphia Gala being held on April 9th, by asking people to attend and/or donate items for a Lancaster or Hershey getaway package for the gala’s silent auction. If you know anyone who would be willing to donate items, please send them our way! Thank you to those who have already donated amazing items – including Evolution Power Yoga, Yoga on Chocolate, Fenz, Cork Factory, MarketPlace Hershey and  CocoaPlex.

For more info on the gala and to purchase tickets, please visit

We have also started a local non-profit, Siena’s HUGS (Help Us Grow Strong) Foundation to help local children with special needs. For more information please visit

While we don’t know what exactly the future will hold for Siena, we do know that she will fight to run along with (or in front of) her sisters. And we will never lose HOPE that Siena will fulfill all of her dreams.

So, that day five years ago, well…. that was then  and this is NOW.  We are ready and we will fight… And we will win. And tomorrow we will celebrate our Amazing Girl, Siena.



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