This is a great read- paints a good picture of the daily struggles of PWS
The photographer for this story spent two weeks with this family to try to gain a better knowledge of Prader-Willi Syndrome – amazing work!
Remembering this day 6 years ago and all the moments in between. Happy Birthday to our Sweetest Siena! Xo
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 www.fpwr.org/events
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 www.youcanhug.com
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.
Thank you to everyone that braved the cold, windy morning to come to Siena’s 5th Annual PWS Walk . It was amazing to see you all there to support Siena and our family. And to those who couldn’t be there, but donated to the raffle, snack or to her fund – we could not be more grateful. It was a very special day and emotional weekend for all, and none of it would be possible without ALL of you.
After 5 fantastic years, we will be taking next year off from Siena’s Walk and will be making big plans for 2017…. stay tuned …..
Photos from the 5th Annual Walk coming soon!!!!
Would like to give a few shout outs this morning….
A MILLION THANKS TO:
Dru Haynos for donating the water
Leanne Hickey for donating and facilitating the craft table this year
Hess Brother’s Fruit Company for donating the apples
Trisha Hawthorne and Offer Blueprint for supplying drinks
Janel Figurelle for taking charge of the Healthy Snack Competition (in memory of Grammy Fig) and to all who have offered to bring a snack!
Matt Cleveland of Occasions Disc Jockeys for playing the perfect tunes EVERY year
Susan Schoenberger for arranging the perfect decor smile emoticon
Jeanette Horn for the awesome balloons
Stephanie Turner Gates for organizing the shirts and putting her students to work for me smile emoticon
Sarah Haines for volunteering to document the day for us!
To Papa Bob for providing the complimentary breakfast to EVERYONE at the walk!
And to all of our amazing volunteers, donors and of course all walkers !!!!!! Where would we be without all of YOU??
See you all soon!!! xoxoxoxox
Hard to believe the walk is one month away! And tomorrow will mark two months since we lost our one and only Grammy Fig… seems like a perfect time to announce The Siena’s Walk Healthy Snack Challenge. This is a special pairing of Grammy’s legendary love to feed people and the healthy diet Siena must maintain….. Those who would like to participate will be asked to bring their favorite healthy snack to share with walk participants, these snacks will be voted on and the winner will receive a prize. Simple as that!! For more details, please email myself or Janel Figurelle. Let’s make Grammy proud!
See you in a month!! xoxo