Walking for Ryan...to Defeat Muscular Dystrophy!
Valerie's Post (Dec 2012)
Dear Family and Friends...
I have decided to leave the original post intact...to document the journey. Unfortunately, the only news I have to report since our original diagnosis is that the add'l testing and muscle biopsy revealed that Ryan is a "Diagnostic Dilemna".
According to the Neurologist...this means that Ryan HAS MD...just that All the testing they currently have for the known versions have come back negative. Is it possible he DOES NOT have MD? NO. :( Actually, the more "rare" it is....the scarier. :(
We will continue this battle. We are GRATEFUL.....BEYOND WORDS...when you join us in it. It gives us Hope. It gives us Strength...so much so...that we DO BELIEVE...we will WIN this battle.
Love and Friendship Always!
Valerie, Rich, Ryan, Julia, Alex...and Team War Horse!
Valerie's Post (Oct 2011)
By now you probably know that the Howley/Robinson family is joining the ranks in the fight against Muscular Dystrophy because MD has given us no choice. Three weeks ago, we were given the news that our oldest son, Ryan, has a muscular disorder. The Muscular Dystrophy Association and the wonderful medical professionals associated with it...are helping us pinpoint his diagnosis.
My pregnancy w/ Ryan was uncomplicated. Ryan was born...full-term...w/out complications. Ryan hit his childhood milestones and even surpassed them...walking at 10 months. He walked early and talked early and his toddler vocabulary words included this phrase "actually, it's aquamarine" while correcting me for calling it "turqoise". Other than tubes in his ears and walking on his toes...Ryan had no other medical conditions to worry about...until now.
As a former military family, we consider ourselves the newest "recruits" in the fight against Muscular Dystrophy. It is now our mission to raise funds and awareness...so that we can WIN THE WAR AGAINST MUSCULAR DYSTROPHY....once and for all.
I have set a fundraising goal of $3500...because that was the amount required for me when I participated in the Susan G. Komen "Race for the Cure" walk six years ago. But of course...my hope...is to raise much, much more.
I hope you will sponsor our team...during these first steps...of our new medical journey. It doesn't have to be much...if each of my 198 Facebook friends made a $13 donation --one dollar for every healthy muscle it takes to smile -- we would raise $3374 (including our family donation)...if everyone donated $15...we would surpass our goal!!!!
Love and Friendship Always!
Valerie, Rich, Ryan, Julia and Alex
Make a Muscle. Make a Difference.
