John Owen’s Adventure, Inc

Wade is bursting out wanting to be so much older than five.  It is impossible that he is not a toddler anymore.  He literally grew up so fast and is doing well at Royal Redeemer ~ I can’t believe we are talking K next year.  As long as his best friend Joey can be with him in class, all will be well!  And yes, his plan is still to be a great swordsman one day and defend our family against any evil empire! And you know~ 2012 would not be the same without a Wade story ~ New Years Eve we had sparkling grape juice in champagne flutes ~ he was so thrilled to have “farkling (sparkling) wine in a fsecial (special) glass” that I had to send a picture to Aunt Dee..gosh he cracks us up.

John Owen is kickin in the grades at St. Albert in second grade.  We continue to be proud of him as he prepares this week for his first reconciliation just prior to his eight birthday.  He continues to be blessed with abundant friendships and plenty of new Lego’s!  His muscles are not cooperating much lately as his weakness is becoming more apparent.  It kind of feels like a freight train out of control.  He is taking it in stride as Tony and I are on the sidelines just trying to keep up and figure it all out.  There are no words that describe how to feel when one day your child could get up from the table, get his breakfast and sit back down and the next day, he can’t, he simply just can’t.   

We are so blessed with our strong family and great friends.  One of Owen’s good friends pretty much summed it up in one of his school assignments… The question was, "How does God help me to use my gifts well?"  His answer was, "God gave me Owen to help because he needs a good helper that cares about him."  Even though his muscles are failing him, clearly his friends are not.  And for that we are all very blessed.

Tony and I enjoyed our Christmas immensely ~ we got to spend lots of quality time with each other, the boys and our family.  We are looking forward to some good heavy snow so the boys can sled ride and start enjoying winter.

We continue to be grateful for your ever-loving support!  We humbly ask for your support through 2012.  We have our runs planned and our picnic in the park, we know we cannot derail duchenne without you.  Please keep the prayers coming especially for Strength and Endurance for John Owen and all our DMD guys.

God Bless and Happy New Year ~ now go get loving on those that mean the most to you ~ constantly remember that each day is a gift! 

Thanksgivings.....                                                                                          11/12/11

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It feels like so long ago since we sent an update your way…. Here we are approaching Thanksgiving and the rush of the Holiday Season......2011 is just flying by!

We truly had an amazing September 11 – what a fantastic way to commemorate our heroes of 9-11 by creating more heroes!  We hosted our first run and with 98 participants and $4,000+ raised, I would say it was a great success. This progressive marathon supported and honored our Mo Joe Marathon Dad, Joe Vasil.  The day had every element of weather – rain, hail and sun just as our race began.  As my sister put it plainly –"God does not rain on John Owen!"  We continue to be humbled by the outpouring from our St. Albert the Great family as you see in this picture, they were aptly represented!  Thank you to every one that got your mo joe on at our first marathon!

And of course, we have to discuss the Big 2011 Event ~ as Joe Vasil really put that Mo Joe in motion on 10/1 and 10/2 running back to back marathons for John Owen.  He certainly derailed duchenne with raising $14,568 for PPMD!  Please read his race report  – Joe, Jeannine and Kyle are a permanent part of our JOA family and we are eternally grateful!

So you would think that running 52.4 miles in less than 48 hours and raising close to 15 G’s would be enough for our Mo Joe?  Nope… think again.  He has championed the Moving Spirit, which is a group of running coaches training any JOA fan (yes that means you!) out there for the Rite Aid Cleveland Race: 5k, 10k, half marathon or full.  What an amazing gift Joe continues to give JOA blessing us with his talents and inspiring others to get on board to derail duchenne.  Please check this link out and share with all of your friends… you never know who has that running bug.

The boys are doing well.  We had a bang up time on Halloween at Aunt Dee & Uncle Greg’s – hordes of candy and great time! 

Wade of course continues to do what the youngest in most families do, keep us laughing with his antics as he vies for attentionJ.  He continues to crack us up like with his latest Wade'ism' - the other day Rutger was having trouble with the computer and I told him to close the windows.  I must have had a worrisome tone for Wade spouted out "Don't worry, if you close a window you can always open the door!"  He is doing very well at Royal Redeemer Pre-School and of course is having a blast with his best bud Joseph – they hit Lego Fest together this month and none of us will ever look at Lego’s the same!

Rutger has started wrestling again with the City of North Royalton.  He is doing great in the forth grade, though it is much more challenging than any of us anticipated, but he is doing well!  He scored a special trip with Tony in the UP of Michigan this fall, salmon fishing… by the second day he was tying flies, casting and reeling in the big ones on his own!  He had a blast as did Tony teaching and watching… thanks Uncle Bob!!

As far as Owen; we have some big news… he got out of the car by himself today!  You might not think that is newsworthy… I mean kids get in and out of cars flawlessly everyday.  I actually thought it was impossible for John Owen. Ya see, we have always gotten him in and out of the car.. we have a crazy, huge SUV… so never would I imagine not helping him.  Well in between errands, we stopped at the house and he wanted to wait in the car.  Next thing I knew, the door opened and there was Owen walking in the house…. Shocked I asked how he got here, with a simple reply he said “I wanted to come in, so I got out of the car and came in.” Lesson learned for me…though his muscles are weak, his determination is so strong and we need to keep reminding ourselves of what he CAN DO not what he cannot.

He has a huge year with First Communion in May.  He is excited about this sacrament, reconciliation in January and has been diligent in preparing for both!  School is awesome – grades are very good which is a huge blessing for us.  We so love Mrs. Tyler and all our second grade teachers (and students) that take such good, loving care of him.

On the health news….He is getting fancy new leg braces, they are made from carbon fiber and look pretty cool, like two prongs of steel holding him up.  He is holding his own, though visibly weaker as he asks for help walking pretty much daily now.   Exon skipping is still going on only two hours south of us in Columbus, OH.  Here is an excellent article about exon skipping and how (if proven safe) can help Owen and other DMD guys .

We were blessed with two surprise events this past month: Ray & Barb Muniak (Grandma and Grandpa) hosted a Polish Night at their community center in honor of JOA!  Clipped Wings United Airlines has also taken JOA under its ‘wing’… both resulting in generous donations and giving JOA an opportunity for new fans!  Thank you both!

We are gearing up for turkey, mashed potatoes and fantastic family memories in the next few weeks.  As we gather around the table on Thanksgiving we will keep you in our thoughts, for your support continues to lift our spirits as we face this daily journey with Duchenne. 

Christmas cheer will soon follow and we so hope that the last weeks of 2011 are blessed and filled with Joy!  Go on and get loving on those you hold dear and always thank God for all you Can Do!!

Until 2012, God bless you,

Tony, Jen, Rutger, John Owen & Wade

Btw…Rumor has it I am training for the Cleveland Marathon….. well not quite marathon material yet, but I do hope to complete the 10k through Moving Spirit.  Please consider joining me as I train to derail duchenne one-step at a time!  Believe me, if I can do it, so can you!

Derailing Duchenne.... one summer at a time             August 29, 2011

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Well here we are with Labor Day fast approaching.  You know what that means to the MDA don’t ya?  Yep Telethon and Fill the Boot Weekend!  Gotta love our Northeast Ohio Firemen they really do work hard for all of us!  If you are out and about give that boot a fill for JO will ya?

We had a fabulous summer!  The Picnic in the Park was the showstopper for all of us – record crowds and over $30,000 will be sent to JDRF, MDA and Parent Project Muscular Dystrophy all to help cure our kiddos.  Thank you for your undying support!  We had so much fun that we have decided to make this a weekend event next year ~ so get up now ~ go to your 2012 calendar and reserve 7/27 and 7/28 for JOA baby!

Thank you is not enough to all our family, friends, volunteers and sponsors.  Please visit our sponsor page, shop them, and thank them!

We had a whopper of a thank you party for our volunteers this past Saturday.  The yard, pool, house and hot tub were filled to the brim with our amazing volunteers!  Thank you guys so much!

School has started ~ so sad that summer is over.  We were able to get away for a family weekend at Catawba and Put in Bay, it was just perfect!  We then went to PA for our shooting week with our friends and again, Bryan Cooke was the long-range 600-yard competition winner using a Remington 40xb with a spring field armory scope.  Needless to say, since this is his second year winning, Tony, Opa, Bob, Bruce and Larry might not ask him back…. just kidding Bryan.. but next year Bryan you have to use your own gun! :)

What a blessing our life continues to be.  This fantastic memory filled summer, our dedicated and amazing family and constant friends.  I am certain that this adventure will continue to keep our hearts light and spirits high!

Rutger is looking forward to his special fishing trip with Tony in September.  John Owen loves that he gets to use his scooter in between classes at school … and then there is Wade~ He starts 4 yr old preschool on 9/12 with his best friend Joseph and already he has educated us about many things ~ like the other day two of the small toads that Rutger caught were sitting on top of each other.  He called me over and said “Mom, those toads are a girl and a boy and you know how I know that ?”  I said, “No”  he said “Because they are meeting”  (he meant mating…. Too funny).

Gotta love um.

We have two more events yet this year – 9/7 Mo Joe Happy Hour at BW3 in Strongsville, consider coming please - $15 to support an amazing runner.  Then our first marathon, the Mo Joe Marathon on 9/11 also in Strongsville and also to support our Mo Joe, Joe Vasil who will be running back to back marathons for JO on 10/1 and 10/2 click here to learn about his run.

Keep those prayers coming for him and for all our DMD guys.  Exon skipping has started in Columbus – just 2 hours away from us - the scientists are working hard to derail the course of this dreadful disease.  Here is the most recent link on it – check it out and pray that these boys show excellent progress and health!

Go Bucks and go get loving on the ones you love…. Soak it in baby ….life is good

God bless you!
Tony, Jen, Rutger, John Owen and Wade

Oh yeah, don't forget Coach to Cure 9/25/11 ~ Football across the U.S. will promote Coach to Cure MD ~  AWESOME

Picnic in the Park ~ What a Blast

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Thank you for the awesome time at German Central on Friday on 7/29/11!  Lawless, Northeast Ohio's Premiere Country Band, The Polka Pirates, Jabez, Famous Dave's, DQ, Augies & awesome sponsors and amazing auction items certainly derailed Duchenne $30,000 to send to research! Thanks much - save the date for 2010 7-27 12!    More to come soon.... 8-7-11