|
|
| OSU Football.... Finally! 9/2/10 So sad that it is the end of Summer ~ what a SWEET summer we had! We had an enormously HOT summer, which was prime for daily pool time and family time.  Just last night, Owen said he feels like he is floating in space, in between his bobs up and down under the water. Baseball with Coach Osowski and our entire White Sox team rocked it! Rutger got to pitch one game and wow was that awesome to see him whiz a ball over the plate – the team earned second place in the NR League!!! Wade is turning in to the dare devil swimmer with the b est full on belly flop we have ever seen.
We have been beyond blessed with a summer full of entertaining friends and family at our house. Cousin time every Wednesday is a memory they will cherish always and I don’t think many of the St. Al teens will forget our JOA thank you party – I think we had 14 in the hot tub and 25 in the pool.
We wrapped up  summer with our awesome, annual shooting weekend ~ Bob, Larry, Bruce, Eddie, Bryan and Tony had the best year ever, all on target at 600 yards! Bryan hit 2 on a six inch circle at 600 yards, clearly the champ of the competition. The boys had a blast hanging with their new friend London, who btw was smitten by Wade (Wade's not so ready for a relationship yet). What a great vaca!
School has started for Rutger (3rd) an d John Owen (1st) at St. Albert the Great ~ They are loving (ok well not ‘loving’) school! We are eternally grateful for our St. Al family! Wade is ready to go – 2 more weeks and Royal Redeemer will NEVER be the same!! J
Our Picnic in the Park (though only 1 month has past it feels so distant alre ady) was an enormous success! We have given away $20,000 directly into the hands of scientists as a result of our event. Over 1,800 friends joined us to celebrate the summer. Our thank yous are endless to our sponsors, volunteers, supporters and family (our shelter). 2011 is already in the works, best news LAWLESS is ‘IN’ BABY! 7/29/11 – Friday night mark your calendars!
One of the coolest things we did after the picnic was to reflect our past 2 ½ years with our board members. I cannot believe that you have sent over $83,000 in 2 ½ years into the hands of the MDA, Parent Project Muscular Dystrophy and JDRF – yep $83 Big Ones! None of this could be possible without you – reading our updates – sending our site to friends – attending our events – being moved to respond! So WHAMMO ~~~~~~ THANK YOU!
Our goal is by 12/2010 to make that 100 G’s – I know we can do it!
Labor day is a HUGE weekend for the MD A. Telethon kicks off on the WB at 9 pm Sunday night and goes through Monday at 7 pm. Our awesome friend and Board Member, Laura Falkinburg, will be presenting the JOA check around 3pm on Monday 9/6– please watch for her, yay Laura!
Also – Fill the Boot is so big this weekend Nationwide! Wherever you live, look for the firemen to be out on the streets with their boot. Please consider an extra dollar for John Owen. We are so close to a cure, that every dollar – every cent – helps bring us there.
We have lots going on in the Fall… here are the plans hope you can join us at some point!
9/25/10 - 4 events!!! ~Speaking of awesome Firemen – the Parma Fire Department i s hosting a 5 k run on 9/25/10 at Parmatown mall for Fill the Boot… my running peeps –(or walking peeps) click it will ya and sign up!
~We also have the Zoo walk for JDRF that day! Dee and Greg Puntel (our sis and bro in law) are so close to raising $10,000… if you would like to help click here!
~The 2nd Annual Firefighters Chili Cook-off Blue Snapper Bar & Grill ~ Contact Matt Morris 440-263-3546 – ok so who does not LOVE CHILI ~ Bring IT
~National Coach to Cure MD (click it and see Owen and Coach Tressel on You Tube – 1.57 min)– Text CURE to 90999 to give a $5.00 donation to our main benefactor (the #1 leader in ending Duchenne) Parent Project Muscular Dystrophy. College Coaches across the land will wear our COACH TO CURE MD Patch – when you are watching the OSU game look for the patch and text it!
 10/10/10 ~ 2ND Marathon Mom, 3rd JOA Run for Sons athlete, Lori Soukup takes center stage at the Chicago Marathon to defeat DMD on step at a time! Thank you Lori for your amazingly hard training and dedication to John Owen – we love you! Please consider motivating Lori through prayer and pocket (if you are able) – click here.
Breaking News (9-4-10) Marathon Mom, Julie Reardon, is at it again!!! 10.17.10 Julie is also running 26.2 miles for JOA... click it for prayer and pocket baby...if you can!
11/13/10 ~ OSU Penn State Coach to Cure party at German Central– JOA Style… oh and did I mention – my big 40 bday party as well…. Adults only $20 a head includes Famous Dave’s Buffet, Crazy Football Party and great beer. Email and mailers coming out soon.
Phew… and I thought we were settling down, but when you look at it on paper, we’ve got that JOA Train running full steam ahead, which means if you blink, you will miss it and miss out!! So Get on BOARD J!!
So as always, I love to save the best story for last. Thanks to many of you that always tell me how much you love our stories about the boys and as always, we have so many funny, crazy, heartwarming or wrenching to share. But this one is about a guy (a big one)…..
And we think it is pretty much the best story we can tell ya….. you see several months back our good friend, Toby Strebel (33) was diagnosed with Lymphoma, massive chemo, aggressive treatment, tons and tons of prayers – and 2 weeks before our picnic, he shared the best news EVER! Cancer Free Baby! Promise for tomorrow!
 With that, until next time, you know what to do – go get loving on your kids, your spouse, your fam, your friends and mostly OSU Football! We hope to see you at one of our events this fall – 11/13/10 ~40 Bday party ~ Yeah I am not afraid – bring that HILL!
Much love – keep praying (click it)… ************************************ July - Let Freedom Ring! 7/5/10 As we listened to all the fireworks over the Fourth, we could not help but to be grateful for all we have – especially our freedoms! We are so excited about July! What a summer we have already had, Rutger, Owen and Wade each enjoyed their own special summer camps this year!  Owen was at the overnight MDA camp for an entire week – Sunday to Saturday - we were so blessed that his cousin, Kaity – was his counselor. He had an absolute blast and can’t wait to go back next year. We have to thank our friends at Lube Stop, Drug Mart and Burger King for selling so many shamrocks this past March and for the 2009 St. Albert the Great Student Council that made it possible for Owen to go to camp!
PICNIC IN THE PARK 7/29/10 We are in full Picnic in the Park gear here at the Dumm’s ~ we are so looking forward to the night because it is one of those times we all get to forget about chronic illness, no matter what you have, but to focus on family, fun and breakthroughs! Click here for the poster you can share with your friends! Donations for the raffles have been pouring in and the planning is underway for a grand spanking great time on July 29th at German Central. We did receive a fabulous article in the North Royalton Post about our event and our fight!! Thank you Leslie Panfil! We have so much planned for the night, that we almost need 2 nights to fit it all in - none of this could be possible without the oodles of volunteers – THANK YOU and if you are a Volunteer click here for a quick message! We are bringing you five opportunities to win stuff this year! Three of which we are pre-selling raffle tickets….here is the scoop….
The basket raffle this year is called the Epic Raffle ~ we have 44 baskets filled with great prizes, these tickets are $1 each. The eXtreme raffle ($5 each) has a handful of high tech items and the 11th Hour Raffle is completely new this year….. The 11th Hour sells for $1 each, if your ticket gets selected you go and pick whatever basket you would like! These three raffle tickets are compiled in a booklet that sells for $20~ we are encouraging pre-event ticket sales, if you are interested please email me jen@joainc.org and I will get you some booklets. Click this list for the complete list of Epic and eXtreme basket items. We will not have a list of the 11th Hour list until the day of the event.
These booklets and individual tickets will be available for sale at the event as well!! D ay of stuff…. 7/11 is back again! This is a $5 dice game, you get 2 minutes to roll the dice, each time you hit a 7 or an 11 you get a raffle ticket, you can select from a number of awesome baskets to win. This is a great high energy, dice game – look for it in the pavilion. The silent auction is always a gre at hit! This year, Brad Falkinburg is back with a life size Blue Herron….. yep life size, this baby is almost 4 feet tall - Owen is holding the work in progress! Ray Muniak is also back, this year with his Butterflies & Flowers valued at $750, this piece is 24 x 28 and will be a welcomed addition to anyone’s home. Dinner with the North Royalton Fire Department is back, along with very nice Indian’s and Brown’s stuff! Owen is planning his piece for the silent auction as well… it may be a surprise for all of us. So the schedule is… 7/29 (THURSDAY NIGHT) Doors open at 5pm with the awesome music of The Polka Pirates, Kids Games, DJ Ken Moenich, Food – FOOD and more FOOD! Basket drawings start at 530 and end by 9ish. Lawless hits the stage at 7 pm right after a few very important awards are handed out. Lets not forget the 7/11 table, which opens at 7 pm. This year we added more beautiful local talent, Studio 82, Mary Kay Manning, Megan and Elania – and new to JOA is Just a Girl & Her Guitar,Amanda Panfil. And for the adult stuff ~ great German Central beer, Hole in One Contest sponsored by the Brecksville Duffers and the Annual Mayor Stefanik Corn Hole Tourney! It will no doubt be an action filled night! Please join us, if you can’t, tell your friends to come for ya, each year our event grows and grows and it is only because of each of you!  Ok – so if you are still reading….. Owen successfully made it through his first year at St. Albert the Great under the amazing care of Ms. Lucarilli and Mrs. Vopat – and so, so, so many others J. Rutger continues his quest for many and all types of pets, recently brought home a few crawfish from Tony’s family cabin in PA,  where Wade was the big fisherman As mentioned early on, Camp for Owen was amazing ~ what a blessing. It was not as hard as I thought it would be to send your baby off for one full week away. Knowing Kaity was there, literally every step he made, was so much easier for us. Boy does this put shamrock season in a whole new light for us!  All in, we are doing well, loving summer, which has included great seats at the Indian’s game (thanks Uncle Bob) ,  tremendous amounts of pool / friend time, bon fires, burnt marshmallows, reconnecting with old friends and making brand new ones – like Cameron Heyward #97 OSU Football player  (ok that was just way way too cool!! Thanks Barbo’s!!!).
Each day for us is an amazing blessing, knowing that we are so fortunate to live in this community, continue to be surrounded by so many that love and support us and to just take each second and hold it close to our hearts for exactly what it is, a Blessing. Well goodness,,,,, I cannot forget this one! The 3rd Run for our Sons trooper has come forth! Lori Soukup will be running the Chicago Marathon in October for John Owen. Visit her page by clicking here and we hope you can keep her training in your prayers as she takes each step to End Duchenne! We can’t wait to see you in a few weeks, please stop us and say Hi – it is such a busy night but we love – love LOVE to talk with each of you! Click it and pray please… see ya soon!! (ok, I just have to add, we are ending our Holiday weekend outside watching Facing Giants and realizing how much we miss OSU ball! Go Bucks!! Thanks again Mike and Barb, Allie and Cameron ~ We will never forget Owen's Michigan Banter, neither will Shake Shoppe!) $$$$$$$$$$$$$$$$$$$$$$$$$$ SPRING IS HERE BABY!! May 5, 2010
Already ~ Spring is in the air ~ winter blah’s have gone and we are moving full steam ahead with life bursting all around us. I have to admit, I have been in a negative funk the past month. Sadly, so many of our friends are going through though times, be it financial, emotional or physical. I actually wrote this update three times already and FINALLY ~ wiped the third version clean and started over. So here it is, our latest update with so much to offer!
Hope for a new day ~~~ yeah that is a great place to start…..
In the thick of Owen’s progression into DMD our dear friend, Mike Mysliwiec sent this to us and we need to share it with you .... it is per fect: Our world stopped
Our hearts break
Tears flow like rain A young life unsettled
Dawn brings hope for a new day A gentle soul A beautiful spirit John Owen
Owen, simply put, is getting weaker. Noticeably weaker. But you know, that gentle soul and beautiful spirit in him, he does not let it get to him. He is as happy as a lark and his heart is seriously light as a feather. He has been ripping up his knees a lot more lately from falling, but he takes it all in stride. He is doing very well in wrapping up his first year at St. Albert the Great and we continue to count our blessings with every day we get to enjoy our three boys.
Speaking of the boys…
 We have embraced the warm spring by opening the pool a bit early ~ they have been in the pool everyday this week ~ even Opa grabbed a swim with them today. We are so fortunate to have a gravity-defying element for Owen to feel weightless and free!! He loves the pool, Rutger has become quite the swimmer and Wade’s confidence in the pool has soared thanks to his great teacher, Ms. Alana at The Swim of Things! We are hoping you will come out and swim with us this summer - the pool is open ~ don't be shy!
Rutger made his First Com munion last month ~ he did a great job and we are so proud of him. He continues to be the keeper of our pets ~ we have four chickens (dang - scratch that three chickens) three goldfish (from the pond we dug up) and soon to be an ant farm. Oh, we had a snake and a frog for a day, but they escaped! Penny and Barrett are our pets – fortunately, they will be staying. I think if he found a T-Rex, he would find a way to negotiate keeping him in the house. All in all, Roo is great.
 Wade is confident that he needs to be in pre-school now with Mrs. Rose and Mrs. Dreifke. Try telling a determined 3 year old that he has to wait! He continues to keep us on our toes and insists that the day is not beautiful, but handsome.
Looking forward to the last full month of school and trying to pack in as much planning for the BIG event in July as possible! In fact, Owen keeps asking about his picnic and who will come this year…..
So on to the picnic.
I gotta say, seeing the crowd at German Central last year was amazing. You all gave us the strength we needed to get through this past year ~what do you say we do that again on July 29th?
We are so excited to host the JOA Picnic in the Park on 7-29! 5pm we open the gates to great foo d, LAWLESS, The Polka Pirates, great raffle items, kids games are back, potentially a Hay Ride and phenomenal awareness to end this horrific thing called Duchenne.
If you can’t make it, send your friends, your neighbors, your family. Be connected, get on board and don’t let Duchenne derail another boy’s life. Stop Duchenne dead in its tracks!
Newsflash ~ edgy new t-shirts will be available and we will pre-sell raffle tickets this year – interested in helping sell tickets let us know via jen@joainc.org. Or click it to donate to the event (6/10 basket donation deadline). So many of you have said they want to help out day of, please email volunteers4joa@yahoo.com to get involved!
Well, I think that is enough for this update. Oh yeah, Owen lived out a life long dream  early March – He, Tony and I traveled to Texas – he was spoiled like an only child! Now that was an awesome trip!! Seriously, since the start of Kindergarten, he kept asking “When do I get to go to Texas?” Well there you go – he went to Texas! Snapped my fav pics of him btw…..
And really, it would not be an update without a Wade story – A few days ago getting ready to leave the house and start the day at work / school / life~ Owen asked me for a dog bone to get Penny in her cage and I shouted out – “We are out of Bones” just as Wade came walking into the kitchen with a handful of Lego guys – and said “Actually Mom, we are not out of Clones” as he lifted his hands up revealing 6 Star Wars Lego Clones – get it Bones Clones… too cute
And how can I almost forget????? Mother’s day is Sunday ~ You hubbies out there, please pamper your wife, we all work hard but you know we moms are a bit more emotional ~ so give us that extra hug and kiss on the neck Sunday. And for my mom peeps – you are loved by me~ have a great day and go hug your spouse, your kids, call your parents tell um you love them… be thankful for today~ that is what we all have ~Today ~it will be gone as quick as a raindrop falls from a leaf.
Keep praying for our troops and our friends in need (click here)
God bless you!!
^^^^^^^^^^^^^^^^^^^^^^  Happy New Year
1/27/10 We can feel it in the air that 2010 will be a great year. ’09 is behind us, we are two years into our diagnosis and more confident then ever that each day is our blessing!
We had some GREAT research News on AVIBOI 4568 (click to read about it). Essentially, Owen is not able to make dys trophin – the protein we have to sustain and help muscle thrive. 4568 is a genetic drug that makes the brain (theoretically makes the brain) read the right DNA message to make dystrophin in our DMD boys. The trial study on 4 boys “showed correctly spliced mRNA for dystrophin” yeah if you got chills reading that – you are not alone!! We are so excited for this research (technically called Exon Skipping). If you want to hear more about it ~ give us a call or next time you see us, ask ~ we love to talk about Hope!
Well, we have embraced 2010 ~ trying hard to k eep up with our ‘healthier and active’ theme for the year. For certain, the abundance of snow late in December  through Owen’s birthday helped with that ~ sledding was IT for our boys. We had several great days sledding and hope to get more in once it snows again! All the boys love it and we especially loved watching our good friend Bryan throw Owen over his shoulder and carry him up the hill on his birthday (Bryan did that over and over again – at least he is now in shape!) Owen is al so loving swimming lessons at The Swim of Things - he actually got to throw a snow ball last friday during class!
Speaking of shape… how is your heart? We had a great event at ATD that allowed us to do a complete Cardio Assessment (interested? Let me know) ~ both Tony and I checked out well… so when it was  Owen’s turn for his baseline Cardio MRI we felt a little more educated. End result – his Heart looks great, a great sigh of relief and once again our amazing support medical team at Cleveland Clinic made this insane process (yes, who do you know has a full cardio work up at 6 years old) flawless and completely under control. BTW, we have suspended Owen’s steroid treatment for now… his emotions and sleep are getting better – we will revisit but our hearts told us to take a break. Great Fun Events… think about it will ya? Hey, are you searching for that perfect Valentine’s day gift? How about tickets for a  phenomenal night out to benefit two beautiful children? Our friends, Mindy and Jeff Cirner have their third annual Rhizo Kids fundraiser planned for 4/23/10 – Reverse Raffle in Strongsville, Ohio. This event will benefit their children’s Jake (7) and Jordyn (4) illness, RCPD (click on their names to learn more). Why not buy two tickets as a Valentine’s Gift and make it a great Date Night in April! Go to http://www.rhizokids.com/ to order tickets On-line – Click BUY TICKETS or give Mindy a call at (216) 215-8566 to order them. $35 per ticket! We hope to see you there! (Interested in donating? Click here). If you can volunteer at this event, email me at rutgerdumm@yahoo.com ~ The cirners need our help ~ Soooo.. Shortly after April, why not join us for a bit of a run? Run for our Son is back, baby… this time Cleveland Style!! May 22 Tracy Knierim, Monica & Roman  Bybik (sis and bro in law) and their entire church Sovereign Grace Church, have dedicated their Biggest Loser Contest to running, walking, skating or crawling a 5K on 5/22 in honor of JOA and their African Orphanage. If you would like to run (walk, crawl or skate) please let us know and we will hook you up. If you are not able to run, but want to sponsor Monica or Roman, give us a shout and they will we ar your arm band for JOA!
Our Picnic in the Park is underway ~ if you would like to volunteer,  please email volunteers4joa@yahoo.com. July 29 we will all have a blast at German Central – Lawless is back baby and Famous Dave’s! As well as all the kids games (as you see here, Perry is a big kid~ thanks Anna for the awesome pic), corn hole and great raffles! If you would like to donate or know someone that does – click it! Last year we had over 1,800 people ~ can we double that? If you attended, just bring a friend ~ then we double our awareness! Oh yeah ~
Don’t forget to check out the MDA Shamrocks this year! Keep tabs on Lube Stop and support this great company for they totally support us and the MDA!!
This would not be an update without a few Dumm Boy’s Stories…
Ok to start, Wade… what a nut. For those that have not seen him lately, you will  say how grown up he is – for those that have seen him lately say to us – there is NO WAY he is 3. He is a nut and makes us laugh every time we look at him (or shall I say tense my entire body as he flies threw the air off any step, ottoman or couch arm) he is ou r dare devil and keeps us smiling. One quick story ~ as of late, he wants me to sleep with him when we put him to bed. Owen and Wade share the bunk bed – Owen on the bottom. So, I crawl up the ladder and snuggle in, remembering that I need to review counting to 50 with Owen. Then I start, “1, 2, 3, 4, 5” and Wade looks me square in the eye, points his finger at my face and says, “This is not a counting bed, get out.” And I promptly, respectfully climbed down that ladder.
Rutger….  He has lost more teeth and is doing the norma l stuff a second grader does ~ he did a great job on his first reconciliation at St. Albert and thankfully did not spend hours on Penance ~ so he must be a good boy J! He had a major highlight before Christmas, he graduated to riding Big ~ Now Big is not just any horse ~ he is HUGE~ as you can see ~ HUGE! But Rutger was not intimidated ~ he was like ~ Bring it!! So he got to ride Big on his last day of lessons and boy has his confidence soared! Thank you Mrs. Mehwald and Mrs. Miliken!
Saving the best story for last….(thinking this is one of my fav stories) Gra tefully, every caretaker Owen has encountered is in the right place, because they always seem to notice the small changes in his character in our absence. ~ This proved itself this past Friday. Due to my work schedule, Owen has been on the bus more often, which means Mr. Carner (St. Albert Assistant Principle), has eagerly gotten him off and on the bus these days. (Usually he only rides the bus Fridays because he wants to “ride the Bus mom”) Ok so anyway ~ he has been on it more than not lately. Friday, Wade and I were able  to make the 9:30 Children’s Mass at St. Al. After Mass, Mr. Carner stopped me and asked (in a very heartfelt, concerned way), “Is Owen feeling ok today?” Of course, as a mom in general I think ~ went to bed late, slipped on the ice this morning.. gees .. don’t know… so after a brief discussion, Mr. Carner said he kept grabbing his right pant leg as he walked… then the wave of sadness hits my eyes, as well as his, as I said, ‘You know that is his weak leg” He said “I know, getting on and off that bus, that leg gives him trouble” So I said I would let him know when he got home.
So for the next hour I was freaking out – do I call Dr. Friedman – could he get that weak in such a short time – do I call his therapist, Mrs. Shannon – do we not stretch him enough – do we start steroids again – arghhhh -----finally 11:42 he gets off the bus ~ no problem getting off the bus ~ no problems walking up the drive, as we enter the house I am telling him about all the errands we have to run and run NOW – then it happens – he grabs his right pant leg and lifts it as he walks into the house – internally I FREAK – but don’t let him know and contin ue on my banter on how busy we are going to be and lets drop the book bag and get in the car – then he stops and looks up at me with these beautiful big brown eyes and says in an annoyed voice “Mom, my pants keep falling down!”
I checked his pants ~ and yep that dang elastic band / button came undone and the poor kid was hobbling threw school all morning. Of course, I laughed and almost cried, it all came down to a button.
This story b rings home so many things ~ the amazing care that St. Albert the Great has for him in paying attention to every detail of his life, as well, that we can’t forget the small stuff. The small stuff, like a little button on a waistband and how much better that can make your kid’s day ~ DMD or not ~ And most of all thankful that we had today and we had that great memory to share with you.
And with that said ~ we hope that tomorrow, the only thing you find wrong with your day is that your pants are slightly too big and if so – give that smile to J.O. and Thank God for all we have! Until the next update, God bless and keep the prayers coming, not just for Owen but all that need it (click for our list)
| |
|