So not just did we ‘feel the love’ on his birthday, we have been overwhelmed by it thanks to all of you. We sent our plea out via the mail requesting you to send letters to the FDA and urge them to support an accelerated approval of Eteplirsen (click here for the primer on Eteplirsen – fascinating). The responses from you have been so much more than we expected; high schools, firehouses, workplaces, neighborhoods, bus drivers, parties, church events – it seems that our request has lit Northeast Ohio on fire!
Owen asked us the other day at dinner, “so when are they getting me that medicine?” Meaning Eteplirsen…….all I could say was 'soon baby, very soon I hope.' The FDA can’t ignore John Owen now with your efforts and we THANK YOU so very much for that!
Moving Spirit is back baby! If you have ever been interested in running and just did not have the motivation ~ we got it for you! Join our spirit and train with the most wonderful group of people ~ all running levels are welcome! Check out our Moving Spirit Page for details. The Rite Aid is 5.19.13 and we are going to kick Duchenne’s butt one-step at a time! Training starts January 31 ~ what a great way to start the year.
We are looking to score a Play for JOA event in the Spring. It will be a Sunday afternoon Dodge ball tournament for all ages. We are super excited about this gig and hope to get it underway soon with details ~ so if dodge ball is your fancy, stay tuned.
Our Picnic in the Park is 7.27.13! We are gearing up and as always welcome donations to the huge basket raffle! Check out our pledge card and share it with your workplace ~ then go mark your calendars for a Saturday of Family Fun!
Cycle in September will hopefully be an annual event! So if your not a runner, dodge ball'r or picnicker…. You can cycle with us! 9.15.13 plan to spend Sunday morning with us whether an avid cyclist or just out for a family ride, we have the plan for you. You bet we have a page for that, check it out!
It is always a blessing to run into you guys when we are out and about and you always want to know how we are. And more specifically how Owen is doing.
The start of 2012 was very hard with Owen’s leg muscles given out completely. It sort of set the stage for us to ‘accept’ this speedy progression of this horrible disease. If you’ve kept up with the updates you may have seen bits and pieces of Owen’s medical appointments, but summarizing it, as I will, is really quite overwhelming:
We were set on accelerated check ups with all the ‘gists’ in our life (neurologist, cardiologist, pulminologist, etc) ~ BUT, by December 2012 our worst fears were simply wiped away. His lungs checked in at a ‘sustained’ level, his heart had an IMPROVED ventricle function confirmed with an MRI (in Sept) and his muscle strength had STAYED THE SAME since the last PT assessment from January 2012~
In short, 2012 started with the expectation of steady decline, when in FACT, God did not allow a decline at all. We are stable baby! Not sure how long we will be that way, Duchenne is still Duchenne ~ but we graciously take stable for today and I believe your prayers, our prayers are working! So don’t stop!
Tony and I are doing very well. We cannot express how blissful we feel each time we see Owen scooting through our home. What our family and friends have done for us this past year in making the modifications to our home was not just a ‘remodel,” they made our house our home for Owen's life and for OUR LIFE!
Not sure what more we could ask for ~ we are simply the luckiest parents on earth. Thank you again for all the ever-loving support, now go get loving on your family.
We’ll see you soon,
PS ~ The best part of life is finding those moments that just make you laugh ~