Westley has been diagnosed with Duchenne Muscular Dystrophy.

Archive for February, 2013

Get your Westley’s Warriors T-Shirts!!

It’s time for all our Warriors to put on their ARMOR!!!

We have created t-shirts for those who would like to support Westley’s fight to cure Duchenne Muscular Dystrophy. All of the net proceeds ($5 for each shirt) will be donated to the MDA Muscle Walk Campaign. We hope you will join us in suiting up for the fight against Muscular Dystrophy.

I am so excited about this year’s tshirts! I took Westley’s idea and turned them into something he was very proud of. I hope you will love them too!

We are offering them in 4 colors (white, red, orange and violet) with black text; short and long sleeve. We even added HOODIES this year! (Caps and Visors to come)

We are making ONE order so don’t miss out!

Order Deadline: 5pm MARCH 14th

To place your order go to: http://westleyswarriors.twistededgepromotions.com/

Ordering Information:

  • T-shirts will be      shipped to me; not directly to you as stated on the website. I will make      sure you all receive your armor.
  • Shipping Date on      site is incorrect. Once we receive multiple orders I will calculate and      make one large order to the printer. So place your orders!!!!

Payment Options:

  • Cash/Check      (preferred) – Mailed to Jessica Groseclose, 3880 Howell Road, Powhatan, VA      23139
  • PayPal – https://www.paypal.com/      to jessicagg@comcast.net
  • Shipping – our      website doesn’t allow us to calculate shipping so we are using the “honor      system”. If you need me to mail your items please add your best guest for USPS shipping to your check or Paypal payment

We hope to see you all wearing these shirts very soon,

Dallas, Jessica, Westley and Wyatt

If you are interested in having t-shirts or other promotional items made please contact

Michelle Nelms
Twisted Edge Promotions
Giving Your Business the Edge!
(804) 248-6310
twistededge@comcast.net
www.TwistedEdgePromotions.com

 


What’s Happening in DMD Research

Do you know what happened in the year 2001?  The MD Care Act was first passed.  At that time there was only $17 million from the NIH for DMD, no drugs for DMD in the pipeline, no guidance for care, no patient registries and the average life span for DMD was in the late teens.

Fast forward to today:  the NIH is now funding $75 million in DMD research, there are 9 new DMD drugs in trial and 10-12 others in preclinical development, care guidelines have been established and shared worldwide, there is an International registry for DMD and amazingly the average life span for DMD has INCREASED BY 10 YEARS!

In early February the MDA announced they will be giving 13.6 million dollars to grants.  More than 40 new grants will support new drug development, greater understanding of disease processes and more efficient diagnosis of neuromuscular diseases.

Please help us to keep this pace of research by making a donation that is sure to bring joy to so many faces!

A cure is possible with your help! Click here to help us find a cure!

I am no scientist but I am going to do my best to explain a few of these trails and what they mean for Westley and others like him.

Jessica

Just 27 more days until the 2013 MDA Muscle Walk

Event Date: March 24, 2013 Event Time: 1pm – 4pm

Event Location: Meadow Event Park (State Fair Grounds)


Show the Love this Valentines Day!

In Honor of KINDNESS WEEK please help us raise our 15k goal to support Muscular Dystrophy research!!!

Please visit our Muscle Walk site to show your LOVE by joining our fight and making a secure donation to SLAY Muscular Dystrophy!!!

http://www2.mda.org/site/TR/Walk/22-B1-379-RichmondDistrict?team_id=12202&pg=team&fr_id=4439

 

Our family would greatly appreciate your help!

 


Denial is a River in Egypt

You may find this blog much different than anything you have ever read from me but I believe telling our ENTIRE story is therapy and has the potential to help others out there. So here I am about to open my soul to all our Warriors…

As some of you may know DMD is passed along to boys 60% of the time from the mother and 40% of the time it is a genetic mutation. As far back as my family can recall there have been no other cases of DMD on my mother’s side of the family and so I had convinced myself upon Westley’s diagnosis that I did not pass this nasty disease onto my sweet Westley but I cannot allow myself to be in denial any longer.

I am showing symptoms (minor as they are) that I am a carrier of DMD. In most carriers no sign or symptoms of the disease ever rear their ugly head but in doing research I have found that some DMD carriers can manifest symptoms. After research I evaluated my “issues”; arm weakness that I chalked up to years of working at a computer but hasn’t gotten any better after exercise and not working at a desk all day for almost a year, major calf pain during and after work outs even though I stretch properly, and shortness of breath. My symptoms are minor compared to some other manifesting carriers but I need to straighten this out as carriers have higher risks of heart disease. I have begun the process of testing to verify my intuition. My initial blood work came back healthy but I will have to have a $6,000 genetic test in March to get the true answers.

There are so many emotions right now; depression, anxiety, fears for my future health along with Westley’s health, GUILT… the list goes on. Two weeks ago I had to MAKE myself get out of the bed and off the couch. The depression and anxiety attacks fogging my every thing sent me to a place where I now am relying on medication to clear the haze that enveloped me. I am not ashamed to admit I needed them and happy to report the fog is gone and I can breathe and enjoy life and my family again. My rational self knows that this is not my fault. I would never have chosen to make Westley go through this. I do believe we were chosen by God to be this child’s parents and were given the tools to raise him well and make a difference in this world.

To those I confided in early on Thank You for your love, prayers and kind words. They are truly helping me find my path again. Through it all Dallas has been my Rock. I thank God for him everyday.

God Speed,

Jessica