Our sweet Siena was diagnosed with Prader-Willi Syndrome on March 10th, two days before her first birthday. This Blog was created to highlight her milestones and chronicle medical stepping stones. This is only the beginning of our journey with PWS, but we do know that not many people know about this rare genetic disorder. Please join us in raising awareness for PWS!!! THANK YOU for stopping by Siena’s Blog! xoxo
Becky, So happy to receive your e-mail,since we weren’t able to be there. I’m so glad it was such a success!!!! Th pixs were so oooooGOOD!!!!! God bless you all, especially Siena. Give Aunt Jean a big hug and kiss for me and Dick. Keep in touch.(No I didn’t get a e-mail from any one but you) I was just about to call you and see how things went. Love and prayers to all of you. Penny
Hello, I came across your blog, and realized what a small world we live in. My daughter at just 6 days old was diagnosed with Prader-Willi. We also live in Hershey. I would love to be in touch and talk if thats ok. After reading her medical history and seeing that she has seen the same doctors as my daughter has recently seen and that we live in the same town was incredible. Your daughter is BEAUTIFUL!* Please keep in touch! 🙂
That is amazing! I will email you!! Thank you for getting in touch!
Hi. I have an 11-year-old daughter with PWS. We live in Oklahoma. There are a lot of parents with children with PWS who have gotten to know each other on facebook. I’d like to invite you to join us. My facebook page is Janis Tull Williams. There are also several pages just for PWS. One is Prader Willi problem solving and solutions exchange and prader willi problem solving and solutions exchange for chat, I am a fan of somebody with prader-willi syndrome. We have a wonderful facebook community. I hope you will join us. By the way, your little girl is absolutely darling.
Hi Janis!! I believe we attended your session during the PWSA conference in November! 🙂 Thank you for posting on here!! I have actually been meaning to contact you because I was hoping for you to review Siena’s Trust…. let me know if that is possible. Thanks again!!
I forgot to mention, my daughter’s name is Audrianna.
Your lovely blog has made me smile, cry and feel incredibly positive about the future – our little girl, JoJo, is 7 months old & was diagnosed with PWS at 6 weeks. We nearly lost her the day after she was born when milk went into her lungs (we didn’t know about her hypotonia at that point) and after emergency helicopters, 4 different hospitals & an artificial lung machine operation in London, thanks to a giant team of incredible health professionals she pulled through. To say JoJo is a tough cookie is the understatement of the century – I will never know how she found the strength to go through what she did but she is an absolute blessing to our family & totally adored by her big sister. I can empathise with the never-ending appointments already – and you are 4 years ahead of us! And I know there will be always be continuous challenges – but to read your posts and see your photos of your beautiful daughters makes me feel even more that we can overcome all of the challenges, and one smile from our little girl will make the hard times so much easier to bear. Keep up the great work! Emily
Emily! I can’t tell you how much this means to me!! I haven’t been the best at updating the blog but will try much harder this year! Welcome to our PWS Family!!!! I am so glad to hear JoJo is doing well, the first year can be so challenging. We are here for you whenever you have questions, need to vent or a shoulder to cry one OR someone to cheer alongside of you when JoJo meets achievements beyond your wildest dreams…. because she will 🙂 The world of Prader-Willi Syndrome is making tremendous strides and our kiddos will overcome the challenges! Much love, The Schoenberger Family xo
I have followed your blog for some time now. I am a pediatric geneticist and am starting Prader-Willi syndrome comprehensive clinic. Every time I read your posts, it touches me. Most recently, Siena’s abscess that went undiagnosed! I would love to chat, if possible.
Thank you for your time and inspiration!
All the best,
Thank you so much for your message! I would love to chat!! my email is firstname.lastname@example.org
Hi Jessica, I don’t know if I ever responded to this!!!! Feel free to contact me!!! email@example.com