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

a happy heart.

In a day of reading post after post filled with anger and dread, I would like to distract your attention with a story about acceptance and kindness….

As I watch my girls at gymnastics every Wednesday evening, I see Isla perfecting her handstands, Lucca practicing her cartwheels and Siena working her hardest to keep up with the other kiddos in her class… I will often notice some of them becoming frustrated with her speed and they will sometimes skip ahead of her so they don’t have to wait – Siena does not mind and I do not blame the kids at all, but it does at times leave me with a heavy heart….

BUT TONIGHT….TONIGHT WAS SO DIFFERENT. I found Siena on the bars and noticed a girl in her group talking to her and trying to help her swing to kick the block like they were supposed to at that station. The girl then moves to the next bar and tells Siena to come along, she proceeds to drag a heavy mat over for Siena to stand on so she could reach the bar. My eyes were glued, my arms had goose bumps….no heavy heart here tonight folks… instead it is exploding with JOY, HOPE & OPTIMISM. I wanted to jump over the balcony and hug that little girl! However, I did contain myself and instead thanked her after class and told her father how she had warmed my heart…. I do hope this has warmed your heart as well.

#havecourageandbekind

2016 FPWR Matching Campaign

14940224_10154265308694051_2097567314151094835_oWhen Siena was first diagnosed in March 2011 with Prader-Willi Syndrome we were given the lengthy list of all the characteristics associated with this rare disease. At the time, the thing that hit me the hardest was when they told me she would most likely never have children or live on her own.

A few weeks ago I was going through Siena’s worksheets from school and came upon this one that immediately brought back all of the emotions I had 5 1/2 years ago and my heart was in my stomach. And then I showed my husband, and he said, “Jamie, Siena could be a mom.” His positivity is what gets me through most days, and his words have become my mantra ever since.

And after attending the conference in Rhode Island this past weekend with so many other positive families, doctors and scientists, I am convinced more than ever that the road to Siena living an independent life is being paved by The Foundation for Prader-Willi Research and all of the family and friends supporting it…..and maybe, just maybe… one day Siena WILL be a mom OR ANYTHING her sweet little heart desires!

SOOOO everyone LOVES to get a deal, right??? Well, RIGHT NOW there is an amazing opportunity to double your money! A very generous family, Leon and Irina Shaulov, have pledged to match EVERY SINGLE DOLLAR raised for FPWR from now until Thanksgiving Day, November 24th. That means whatever you donate will be DOUBLED to fund research and find a cure for our kids.

Since we did not have a walk this fall and many of you have asked how you could help this year, we are asking that you consider making a donation of any amount. Thank you to all of our family and friends for everything you do for us and for all the love you give our Siena Eve! This is an exciting time. We remain hopeful that Siena, and all her friends, will — one day — live an independent life!

CLICK HERE for Siena’s donation page:
http://onesmallstep.fpwr.org/…/use…/sienaeve/virtualwalk2016

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)

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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.

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