Taking a walk with Tony the other day, we both crunched on a leaf on the ground and instantly caught the scent of Fall. It is so refreshing to go from 90 degrees to 66 in one day – gotta love Northeast Ohio!
Fall means routine. Back to school, back to rushed nights and early mornings. Football, amazing walks and beautiful colors. This Fall, Owen, now a freshman in high school, is not on a ‘football team” though his teammates from 7th and 8th grade certainly have not forgotten him.
Fall means routine. Back to school, back to rushed nights and early mornings. Football, amazing walks and beautiful colors. This Fall, Owen, now a freshman in high school, is not on a ‘football team” though his teammates from 7th and 8th grade certainly have not forgotten him.
We received a text from Coach John that one of Owen’s teammates had written “Derail Duchenne” on his football cleats. His dad hadn’t noticed until after the game and he asked Michael why he wrote it: “When the game got tough he’d just look down and remember who really is the toughest and it made him stronger.”
It really still shakes my core when we learn of the impact Owen’s life has on others. The simple reminder that we all struggle but knowing we have someone to lean on for strength, right? It is amazing and more so that it is our son who shares that strength.
It really still shakes my core when we learn of the impact Owen’s life has on others. The simple reminder that we all struggle but knowing we have someone to lean on for strength, right? It is amazing and more so that it is our son who shares that strength.
It is such an honor to be the mom of not just Owen, but Rutger and Wade. Though every day we have struggle, from watching Rutger and Wade be Owen’s hands and feet. Feeling how unfair it is to them that their childhood too has been robbed by this beast. But knowing that we together are stronger than we have ever been as a family. I am so proud that we don’t hid our fears and our needs. We shout for help and rejoice with you in the victories. I know these lessons our kids will take with them to shape their families with and though I utterly despise Duchenne with every bone and breath in my body, I love that we have not let it win.
Today we received a beautiful donation from a St. Ed’s teacher. He was so inspired by Owen’s friend, John Thompson’s paper about experiences that shaped his relationship with God. John’s story included Owen, his life and their friendship. Again, as a momma I couldn’t be more proud that through Owen God is working. He is working in so many others and if we can bring people closer to Christ, again though I utterly despise Duchenne with every bone and breath in my body, then Bring it. For God will Win and not Duchenne!
Speaking of God – and I know I am going off the normal trail of our updates – but I read a post on FB (btw I am trying to stay off as much as possible) stating “How do you feel about God allowing so many youngsters to be stricken with DMD??”” Honestly, I could not even let this type of discussion process in my brain. And again, I will go directly to us making the absolute best life for Owen and through our fundraising efforts, as much money we can raise to make it the absolute best life for all that battle this beast every second of every day.
Now – on to our next “Battle” Elsa Kilbane, my best friend, and I will be at the Akron Marathon on this Saturday, Elsa the Full 26.2 – me the Half or as much of it as I can. She will be running her 13th Marathon for Owen. She is the true example of #initforthelonghaul as if you calculate the number of marathon steps she has run (not training steps just marathon steps) my Garmin estimates that 4 miles is 8,340 steps – so 13th marathon – get this is 710,151 steps!
Now – on to our next “Battle” Elsa Kilbane, my best friend, and I will be at the Akron Marathon on this Saturday, Elsa the Full 26.2 – me the Half or as much of it as I can. She will be running her 13th Marathon for Owen. She is the true example of #initforthelonghaul as if you calculate the number of marathon steps she has run (not training steps just marathon steps) my Garmin estimates that 4 miles is 8,340 steps – so 13th marathon – get this is 710,151 steps!
YEP you see it --- don’t you????
51
If you would be so kind as to continue your support through prayer and pocket – we start at 7 am 9.29 and need all the lovin we can get so I can be sure to run her in! Please consider a donation at http://www.joainc.org/contributions.html
51
If you would be so kind as to continue your support through prayer and pocket – we start at 7 am 9.29 and need all the lovin we can get so I can be sure to run her in! Please consider a donation at http://www.joainc.org/contributions.html
Speaking of 51 (this update does have a lot of segues sorry) Owen continues to receive weekly infusions of Exondys 51 (Eteplirsen). As a refresher, the medicine turns on the DNA in his body so that his brain allows him to start producing dystrophin. The protein he is not able to make on his own.
Is it working? YES
How do we know? Results – his lung and heart function continue to be stable – he simply is not getting worse. I don’t want to tell you what getting ‘worse’ means, you literally just have to open Facebook to any Duchenne community and if a candle is not burning, a new fear or weakening organ/muscle is posted.
Is it working? YES
How do we know? Results – his lung and heart function continue to be stable – he simply is not getting worse. I don’t want to tell you what getting ‘worse’ means, you literally just have to open Facebook to any Duchenne community and if a candle is not burning, a new fear or weakening organ/muscle is posted.
I do often feel incredibly guilty that 51 is the only medicine currently approved by the FDA and that Owen is lucky enough to receive it (though that is not without a very steep price that sadly is coming all to fast upon our life). It is so maddening that we don’t have a solution for ALL Duchenne boys – Right now!
Though I certainly know there are many fierce families working around the clock through their non profits to find that fix, that solution, that and God Willing – the Cure that will truly End Duchenne.
So yes – it is working. I continue to put my faith in our Lord that He will lead us to the next step. As I said the medicine is incredibly expensive and I have absolutely no idea what 2019 will look like for our Family, I can just pray that God will get us to where we need to be. And we ask too, that you pray for that as well.
Though I certainly know there are many fierce families working around the clock through their non profits to find that fix, that solution, that and God Willing – the Cure that will truly End Duchenne.
So yes – it is working. I continue to put my faith in our Lord that He will lead us to the next step. As I said the medicine is incredibly expensive and I have absolutely no idea what 2019 will look like for our Family, I can just pray that God will get us to where we need to be. And we ask too, that you pray for that as well.
And Owen…… he is loving ninth grade. He loves his History teacher Mr. Folk. Every night at dinner the Mr. Folk stories go well beyond the dishes being cleaned up. His new aid, Mrs. Daville is also incredible and instantly feel in love with O. From our Bus Driver Ms. Heather through ever person Owen comes in contact at North Royalton High School, we simply just can’t say enough! We are so blessed with this community and so happy that he is doing so well.
Wade…… he is great! He is in sixth grade this year and really coming into his own. He continues to read a book at least every other day and of course is loving the video game playing with his brothers.
Wade continues to be the one that always makes us laugh. Goodness, where does that kid get his humor? We love it!
Wade continues to be the one that always makes us laugh. Goodness, where does that kid get his humor? We love it!
Rutger…. He got a job at ACE Hardware. He is really enjoying it and working out his schedule between high school classes and a few college classes, he is ready to get a jump on being an adult. He is a rock star driver and it is great having that extra hands on the wheel when we need it. Hard to imagine he will be out of High School in 2 years.
And Larry! He is four years old today in human years. He continues to be Owen’s right hand man, constant companion and BFF
HAPPY BIRTHDAY LARRY!!!
So – lots to cover in this update! It feels like there is so much going on but all at the same time – nothing new at all! Oh – we did get to see an OSU Football game this weekend! We were the highest bidder at the El Salvador Mission fundraiser this winter. The boys got to hang out with their cousins (and a great tailgate with RJ Sullivan and fam xo) while Tony and I had a great tailgate at “The Nut” and awesome seats. The Band was just so amazing! It was a great little get away, right, where for 24 hours you forget you have Duchenne. So worth it!
HAPPY BIRTHDAY LARRY!!!
So – lots to cover in this update! It feels like there is so much going on but all at the same time – nothing new at all! Oh – we did get to see an OSU Football game this weekend! We were the highest bidder at the El Salvador Mission fundraiser this winter. The boys got to hang out with their cousins (and a great tailgate with RJ Sullivan and fam xo) while Tony and I had a great tailgate at “The Nut” and awesome seats. The Band was just so amazing! It was a great little get away, right, where for 24 hours you forget you have Duchenne. So worth it!
We are preparing for our 2019 fundraising events. Our 5k Camo Run Lite was great fun – we will keep it on the books for early May! Hoping to get more kids to the Nerf Battle as that is always a blast (early Spring).
And the biggie!! Picnic in the Park Woot Woot 7.13.19 We need ideas to shake it up - so please send us your comments on what you like, what you don’t like and what we are missing! Gotta keep it fresh for our Duchenne boys!
God bless you and thank you for pouring your love on to us~
Tony, Jen, Rutger and Owen
9.23.18
And the biggie!! Picnic in the Park Woot Woot 7.13.19 We need ideas to shake it up - so please send us your comments on what you like, what you don’t like and what we are missing! Gotta keep it fresh for our Duchenne boys!
God bless you and thank you for pouring your love on to us~
Tony, Jen, Rutger and Owen
9.23.18
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