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.
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.
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!
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
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.
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.
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.
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!
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