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.
Siena had an amazing weekend celebrating her 11th Birthday!! Thank you to everyone who followed along on her Birthday Countdown and donated to her FPWR fundraising page we are just $300 shy of our $1500 GOAL! http://act.fpwr.org/site/TR?pg=personal&fr_id=1732…
But, NOW we DO need to ask for one more favor!!
AND WE Thank You in advance from the very bottom of our hearts…
The PWS community received some disappointing news last week. The FDA declared that it will not review DCCR without an additional clinical trial. DCCR is a drug that has been developed by Soleno to treat hyperphagia (insatiable hunger), one of the most debilitating symptoms of PWS. This decision could cost years, or worse, the loss of a potential treatment. It’s a huge setback for PWS families. DCCR is the FIRST drug to address hyperphagia, and has also has been found to be effective in treating aggressive/destructive behaviors, fat mass and other metabolic parameters. https://www.biospace.com/…/soleno-therapeutics…/Importantly, it is also safe. https://soleno.life/dccr/
Clinical trials take A LOT of time and money. If the FDA does not overturn its decision, Soleno may not continue with another trial due to financial constraints. We need this drug as treatment.YOU CAN HELP!
Simply complete this 5 question survey – it takes about 3 minutes. We’re very grate-FULL for your support! Responses will be shared with the FDA as we continue to advocate for safe, effective treatments. AND PLEASE SHARE!
4. Everything! DCCR has shown to be safe, effective, and is the only viable treatment for the most major symptoms of PWS. It can save lives. Plain and simple. It is critical to get this drug in the market as soon as possible!
The support of Family and Friends has, without a doubt, been the root of our triumphs since Siena’s Prader-Willi diagnosis.
Whether you have accompanied me to a doctor’s visit, attended one of Siena’s Walks, donated to a fundraiser, taught your children the beauty of inclusion, or offered words of encouragement…. from the bottom of our hearts, we THANK YOU xo
With the help from friends and family, two things we started right away were the Siena’s HUGS Foundation and Siena’s PWS Walks. HUGS is a non-profit with the purpose to find and create activities for those with special needs to participate and feel welcome. We have had a few art nights and fundraisers and we hope to start more activities in the near future. If you know anyone or have ideas of how to get involved, please let us know! For more info: http://sienashugs.com
For 5 years we held Siena’s PWS Walks. It was always the most indescribable feeling to watch as people arrived in those early morning hours to support our girl. We had the best volunteers and raffle donations, and just thinking about those years brings tears of gratitude. 2015 was our last walk and we thought about doing another one last year, but, of course, life had other plans for us all. Stay tuned, maybe we will dust off our walking shoes someday soon… as I am sure for anyone who has attended, you are missing those yummy home-cooked breakfasts from Papa Bob and Andy’s comedy act/commentary during the raffles.
In all sincerity, thank you to everyone who has followed along, offered a helping hand or a big ole hug over the past 11 years. We love you xo
What have I learned in the 10 years since receiving the call confirming Siena’s genetics test came back positive for Prader-Willi Syndrome?
#1. That even the best plan can unravel right before your eyes, and sometimes what unfolds is better than what you could have ever imagined.
#2. Advocate. And then advocate again. And again. And again.
#3. But, also, take a break when needed and give yourself grace… and wine.
#4. Finding balance is life’s ultimate goal. If you have found it, please send your secrets.
#5. Even the best medical specialists can be wrong.
#6. Do your own research and don’t be afraid to be “that parent”
#7. Do whatever it takes. And then…do.it.again. And who cares what ANYONE thinks.
#8. And then. more wine.
#9. Find your people…. and then let them be all in and let them be all out. Be Vulnerable. Be Strong. Be whatever you need to be at whatever the hell moment you feel like it. Just Be. There. Always. But also, know when you can let go.
#10. It is ok. We are ok. Actually. We are Amazing.
Sharing a 10 minute video… 1 minute for every year that has gone by since Siena’s Diagnosis Day. If you watch every minute til the end, I promise, you won’t be disappointed… it pretty much sums up the past 10 years. xo
I don’t know that it was Andy’s dream to have 3 daughters, but I can tell you for a fact he was meant to be a “girl dad”…. you didn’t hear it here, but he might even be better at brushing their hair than me … shhhhh …
All joking aside, he really is an amazing father and I can’t imagine a better partner to be beside as we weather the storms. He is there to calm us when we feel overwhelmed and build our strength when we feel like giving up.
Being a parent is hard work. That is the truth. And having a child with any health or behavioral issue does not make the journey any easier. It is a roller coaster, for sure. I think for us, what has helped on even the hardest days is knowing that it is OK to not always see eye to eye, to be real with our emotions, and let each other be vulnerable because a good cry can, indeed, water the seeds to tenacity.
We have had to learn to master a whole new skill set that neither of us could have imagined, but we do it together and where one of us falters the other fine-tunes, where one of us shines the other finds something else they can perfect. We are far from a well-oiled machine, but more like the little caboose that knew it could.
While his work schedule hasn’t always allowed him to spend the family time he values so much, one good thing that came from the pandemic is that he has been able to change all that and we are LOVING having our guy around on the weekends! And as for that “girl dad”… I will let these videos and photos speak for themselves. xo