Purple Week

I met my dear friend, Valerie, in August of 2011 through Baby Boot Camp and we hit it off immediately.  By the following spring, we were planning our first family vacation together and over the past 4 years we have shared so much: holidays, births, races, nights out, birthdays, vacations, baptisms, and so much more. We have watched our children grow up together and we have grown as mothers together.  That being said, when she received the call that her son, Will, tested positive for Sanfilippo syndrome, a rare, incurable, terminal disease it rocked me to my core.  As I write this, I can't hold back the tears.  Will is the sweetest, most gentle, loving, almost 5 year old that you can imagine.  He has the best memory and has a soft spot for Mr. Rich (I mean, I know he loves me, too, but he really loves Rich!)  As a mother, you're biggest fear is that something happens to one of your children that you can't control and Valerie is facing this every day now.  You feel helpless when a friend receives news like this, and, of course, more than anything you wish, pray and hope for a miracle but in the meantime we are here to support them however we can.  Their lives have been turned upside down and inside out, but their family is putting one foot in front of the other and making it their mission to save their son and won't stop until a cure is found.  The Byers' family deemed May 11th-May 15th Purple week and planned all sorts of fundraisers and events to raise awareness and funds for Sanfilippo Syndrome.  On Wednesday and Friday of that week, My Gym, hosted a pay and play where donations to the foundation were accepted to play for two hours. It was so much fun!  Here is the group from Wednesday.

 Friday, May 15th was National MPS awareness day so everyone was encouraged to wear purple to promote awareness.  Joseph wore his shirt to school and his teachers asked about it and we hung a flyer up in his classroom so Joseph did his job well!  After school we headed back to My Gym to play again and then the restaurant, Jerry Built Burgers, had a fundraiser that night so Rich met us there and we had dinner with all of our friends.  It was a great event and the kids had so much fun eating dinner with all of their friends!

 Ella continues to wear her shirt at least once a week!

I keep this blog for the blog books so know that I'm not reaching a ton of people, but if anyone out there is reading this and would like more information about Will, Sanfilippo syndrome and how to help please check out the links below.   

https://www.facebook.com/WILLpowerMPS?fref=ts

https://www.crowdrise.com/willpowermps

www.CureSFF.org

And, please, keep Will Byers and his family in your thoughts and prayers.