Westley has been diagnosed with Duchenne Muscular Dystrophy.


I awoke this morning to the sound of Westley through the monitor asking me to help him roll over in bed. As my feet hit the floor so did my Westley’s Warrior bracelet. For those who see me regularly you know this faded orange bracelet is part of my everyday apparel. Whether I am in my jammies or a little black dress this item has only been removed once for a surgery (hospital rules).  I’m not alone though, for 6 years I have loved seeing others wear their Warrior bracelets in honor of Westley.  Our family ordered these bracelets at the very beginning of this journey; Westley’s Warriors – Fighting to Cure Duchenne. We wear them, our family and friends wear them. Even complete strangers who find strength in Westley’s journey wear them.  Over time the color has faded and as I held it in my hands this morning I realized that the words have completely eroded with no sign that there was a message to present to the world and yet that bracelet still means so much to me. That bracelet brought so many closer to us; to Westley. It gave us strength. Bonded us. Made us all stronger and more appreciative of our lives. As the color and the words faded away it only made me love it even more. It was a constant reminder of how amazing my child (and many others) are; how they fight this disease with such dignity, grace and LOTS of laughter. How I can, will and have found a strength inside me to be the best mother I possibly can be to Westley and Wyatt. Seems silly a little piece of silicone could mean so much and evoke so many emotions not just from me but many of Westley’s Warriors.


I’ve searched the house for a replacement but it seems we have given every bracelet away over the years. I don’t need a bracelet to remind me to be strong anymore but I do have hopes I’ll find an unused one at the bottom of an old purse one day when the journey gets harder and I’ll slip it back on my wrist feeling a little bit stronger knowing there are others out there with their own faded orange bracelets.

We are on the cusp of Westley’s 13th birthday and 6 years into his diagnosis. For those who wear a Warrior band or keep it close by please take a moment to reflect upon it. It’s been a journey to say the least but still this young man amazes me with his positive attitude. He brings me and those he comes in contact with such strength not because he is trying to be a role model but because this is just who he is. He isn’t happy despite his disease; he is just happy. There are so many lessons to be learned from him and I am eager to continue down this road no matter how bumpy we know it will be because he will teach me so much along the way.

Maybe your bracelet isn’t orange; maybe its red or pink or blue or green. The idea is still the same. Find strength in how others chose to fight through the hardships in life. See how they choose to be happy despite all the odds.

God Speed,


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Back in town and Fundraising is in Full Swing!

We returned home from Cincinnati Children’s Hospital exhausted! Exhausted really doesn’t even cover how we felt to be honest. After a little time to reflect and process the information we are happy to be home with a healthy checkup. My two main concerns where pulmonology which has remained in the normal range and cardiology. I quote the doc “If you put his heart next to a normal child of his age you wouldn’t be able to tell the difference.” Needless to say when he left the room I shed a few happy tears. Overall we left with lots of great news but there are still a few things we need to work on medically and new equipment to procure to help Westley’s at home.

We didn’t have much down time when we returned because we had our BIG benefit concert to plan!!!! So much work (all good) has gone into making Saturday’s event, MD Palooza 2015 what is sure to be a great time for all. We can’t believe all the donations that have been made to make sure everything is in place! We truly know the best people!

For those who can’t make the event we kindly ask that if you find it in your heart to help us END Duchenne that you make a donation to PPMD at our fundraising site. All proceeds go to the fight against Duchenne. http://www.parentprojectmd.org/site/TR?fr_id=3920&pg=entry

September 19th @ 2150 Anderson Hwy, Powhatan, VA 23139
Gates Open at 4PM
Adults – $10 
Kids under 17 – FREE

Thank you for your continued love and support in our fight to End Duchenne.