To all of you who completed the survey for the FDA and/or donated to FPWR THANK YOU! We have now surpassed our goal of $1500~ xo
Advocating for something or someone you are passionate about, isn’t always easy. Being real + raw with your emotions and opening yourself up for support OR criticism, well that is a choice we all get to make each and every day. Some days it feels right and some days, it does not. Writing these posts over the past 2 weeks brought up a lot for me and has been extremely therapeutic. Don’t get me wrong, I shed a ton of tears, and had to fight through a lot of insecurities to share so freely. But it has allowed me to realize the strengths we have built over the past 10 years, and also uncover the vulnerabilities that still linger.
If you followed along with my Siena & PWS posts over the past weeks, thank you. If you just scrolled on by, that is absolutely ok too. We made a decision 10 years ago that we would be open about our trials and tribulations with PWS. It was a decision we did not come to lightly, but is one we hope will somehow help others and bring awareness to something we had never even heard of before Siena was born.
PLEASE ALWAYS KNOW THIS….. We don’t look at Siena and see PWS, we look at Siena and see Siena. A beautiful, kind, hilarious, feisty, insanely smart young lady, who just so happens to have a rare chromosome abnormality. EVEN THOUGH PWS IS SOMETHING SIENA HAS, PWS DOES NOT HAVE SIENA. That truth, will always win the day.