Road to Recovery

Siena is making a speedy recovery after her third bilateral myringotomy (ear tube surgery) yesterday and told me last night her ears feel better. It was quite amazing to me how different our experience was yesterday compared to 2011 when Siena was first diagnosed. I remember just 5 years ago feeling that even the staff at Nemours knew very little about Prader-Willi Syndrome. But yesterday was not like that at all – I didn’t feel like I was speaking a different language. Even the cardiologist in Hershey seemed knowledgeable about PWS.

ALL OF THIS TO SAY THANK YOU. Thank you to each of you who have told someone else about Prader-Willi Syndrome and have helped us spread awareness. Thank you to each of you who year after year attended Siena’s PWS Walks. And thank you to everyone who recently donated to Siena’s Foundation for Prader-Willi Research fundraising page, which raised almost $4000! In just a little over 60 days the PWS community raised $1,388,000 – all of which was MATCHED by Leon and Irina Shaulov (parents of a son with PWS)! These are the reasons we feel more confident every day that Siena will be able to accomplish anything her sweet little heart desires!

We work hard as a family to keep Siena safe and strong, but if it were not for all of you, I am certain we would not be where we are today. So sending a HUGE hug to EVERYONE and wishing you and yours a healthy and happy 2017! MUCH LOVE & GRATITUDE TO YOU ALL ! xoxo

One last thing: If you are still looking to donate to FPWR, inspired by the Shaulov’s generous matching gift, the Grandparents of a child with PWS have pledged to match donations through the end of the year (up to $50,000)! Here is Siena’s page link!
http://onesmallstep.fpwr.org/…/use…/sienaeve/virtualwalk2016image

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