As we kick off PWS Awareness Month 2014, I look back on when I first began this blog and I am truly amazed at the transformation I have seen in the past three years. The amount of information now available about Prader-Willi Syndrome and the advocacy by the PWS community has grown by leaps and bounds, and I can honestly say that I feel blessed to be in the presence of such wonderful people and am wide-eyed and hopeful for what the next three years will bring.
Siena has certainly not had an easy road…by the mere age of 4 she has seen more doctors and specialists, been through more sleep studies, had more x-rays, blood tests, shots, medications and therapies than most people have in their lifetime. To date, in addition to PWS, she has been diagnosed with hypothyroidism, scoliosis, narcolepsy and cataplexy just to name a few. But yet, she goes through it all with little complaint and remains our sweet little Siena.
I will apologize in advance if there is PWS overload through the month of May, but I made it a promise to myself, Siena and our family that I will never stop advocating for the needs of those with Prader-Willi Syndrome. The more awareness we bring to this rare genetic condition, the more hope we have that our children will be able to lead a life without limitations, and the closer we will get to a cure. And so hopefully, by the end of this month, you will all be knowledgeable enough to be able to spread the word about PWS 🙂
To end this first post of Awareness Month, I would like to thank EVERYONE who has made a difference in Siena’s life… whether you have attended one of Siena’s Walks, contributed to a fundraiser, been one of her doctors, therapists or teachers, or have even just read this blog ONCE… we thank you. To Grandma Becky, Poppy Greg, Grandma Susan, Papa Bob and all of Siena’s Family… none of us would be where we are at today without ALL of you. It takes a village and we are forever grateful for all of you. xoxo