Today is the last day of Prader-Willi Awareness Month, thank you for following our journey.

We had a very rough beginning to our 2017 and know first-hand how important it is to educate our community about rare diseases. In January, when Siena suffered extreme abdominal pain, we went to our local Emergency Room and were sent home TWICE with them telling us it was just constipation. Two characteristics of PWS – high pain threshold and slow digestive system had masked a life-threatening abscess that was causing a major infection in Siena’s body. Thankfully….VERY THANKFULLY… we ended up at a hospital that was knowledgeable about Prader-Willi Syndrome and took the steps needed to find the abscess. Siena was put on IV antibiotics and had to fast for 6 days while she remained hospitalized, and continued antibiotics for 2 weeks after being sent home.

We are still doing testing and trying to figure out what caused the abscess and it could turn out it has nothing at all to do with Prader-Willi Syndrome. BUT, the fact remains that we could have lost our sweet, sweet girl because our local ER did not have the knowledge about PWS, nor did they listen when I tried to explain to them about her high pain threshold. Instead, we were sent home and told to double up on the mirilax and give her an enema.

KNOWLEDGE and AWARENESS is what SAVED our daughter’s life. Scary, however, that we had to drive almost 2 hours to find it. The reason we tell our story is not for anyone to ever feel sorry for us or for Siena, but to spread AWARENESS and KNOWLEDGE about Prader-Willi Syndrome…. so that hopefully the next time she needs emergency medical attention, we can get the care needed right away…. so that someday, our words will find the ears and mind of someone who will find a CURE.

“If I can’t find the cure, I’ll

I’ll fix you with my love

No matter what you know, I’ll

I’ll fix you with my love

And if you say you’re okay

I’m gonna heal you anyway

Promise I’ll always be there

Promise I’ll be the cure”

#cantstop #wontstop #PWSAWARENESSMONTH #PraderWilliSyndrome #SienaEve