Last 2016 JOA Event, Catch our Spirit!
So excited that we can celebrate this awesome year with our last event, our Moving Spirit 2016 Team Half Marathon and Marathon. We get to celebrate the approval of Eteplirsen by the FDA in the very city Eteplirsen was first dosed in the original 12 boys, Columbus, Ohio at Children’s Nationwide in the very race sponsored by Children’s Nationwide!
Kathy Warner, Diane Eichman, Peg Sonday and James Harrison will rock out the Full Marathon on 10.16.16! Deb & Ronan Factora, Jack Reardon, Julie Reardon, Sally Kapcar, Christie Kinney, Carrie Valdez, Elsa Klibane and I will run the Half!
If you recall this team has run many, many miles for Duchenne. From Fulls to Halfs to 10k and 5k all steps to stop this beast of a muscle killer. On Sunday 10.16.16 we will run 222.70 miles. Please say a strong prayer Sunday morning that we make it through these many miles with safety, courage and joy in our steps.
Consider please donating this week to our team.
$1 per mile = $222.70
$0.50 per mile = $111.35
$0.25 per mile = $55.68
$0.1 per mile $22.27
http://www.joainc.org/contributions.html
Any donation great or small will be so appreciated. We will celebrate every step with the FDA approval. Join us through pocket and prayer to #derailduchenne
Kathy Warner, Diane Eichman, Peg Sonday and James Harrison will rock out the Full Marathon on 10.16.16! Deb & Ronan Factora, Jack Reardon, Julie Reardon, Sally Kapcar, Christie Kinney, Carrie Valdez, Elsa Klibane and I will run the Half!
If you recall this team has run many, many miles for Duchenne. From Fulls to Halfs to 10k and 5k all steps to stop this beast of a muscle killer. On Sunday 10.16.16 we will run 222.70 miles. Please say a strong prayer Sunday morning that we make it through these many miles with safety, courage and joy in our steps.
Consider please donating this week to our team.
$1 per mile = $222.70
$0.50 per mile = $111.35
$0.25 per mile = $55.68
$0.1 per mile $22.27
http://www.joainc.org/contributions.html
Any donation great or small will be so appreciated. We will celebrate every step with the FDA approval. Join us through pocket and prayer to #derailduchenne
Have to leave you with this heartwarming story about
Owen’s Football Team
Gone……
It’s almost an out of body experience to listen to one of your kid’s friends share his thoughts about your son and their friendship.
Of course, like all parents, we want our kids to have friends, be social and create great childhood memories. I never really thought about the impact our kids could have on their friends, I guess I have just been stuck in the ‘so grateful they have friends’ mode to even consider the ‘what our kids could mean to others.’
Last night, I stood in for Owen at the St. Joseph & John / St. Albert 7th grade football meeting. This team is a joint football team between the schools of 12 and 13 year old boys. Half of these players are Owen’s classmates, we have been together since Kindergarten (some even pre-school). We’ve been blessed by these families with their generous support for JOA and even more, their heartfelt love for Owen and our family.
Owen was inducted into this football team last night as the 24th player and each player will wear Owen’s name on their helmet all season. This started from the pure friendship from Owen’s friend John. The day of Owen’s spine surgery, John was really upset at practice and asked his coach and teammates to pray for him. From that, the spirit of Owen on the team came alive. They asked Owen to come last night to receive his team helmet and jersey and talk with the team about Duchenne. Since he was not up for it physically, I gladly took the challenge.
Owen’s Football Team
Gone……
It’s almost an out of body experience to listen to one of your kid’s friends share his thoughts about your son and their friendship.
Of course, like all parents, we want our kids to have friends, be social and create great childhood memories. I never really thought about the impact our kids could have on their friends, I guess I have just been stuck in the ‘so grateful they have friends’ mode to even consider the ‘what our kids could mean to others.’
Last night, I stood in for Owen at the St. Joseph & John / St. Albert 7th grade football meeting. This team is a joint football team between the schools of 12 and 13 year old boys. Half of these players are Owen’s classmates, we have been together since Kindergarten (some even pre-school). We’ve been blessed by these families with their generous support for JOA and even more, their heartfelt love for Owen and our family.
Owen was inducted into this football team last night as the 24th player and each player will wear Owen’s name on their helmet all season. This started from the pure friendship from Owen’s friend John. The day of Owen’s spine surgery, John was really upset at practice and asked his coach and teammates to pray for him. From that, the spirit of Owen on the team came alive. They asked Owen to come last night to receive his team helmet and jersey and talk with the team about Duchenne. Since he was not up for it physically, I gladly took the challenge.
After my short talk about Duchenne and mainly special needs kids, his friend, John gave an amazing testimony about his friendship with Owen. It was one of those times that though I did not record his talk, I will forever replay his very mature, kind and heartfelt words over and over.
John said Owen was one of the best friends he’s ever had. Not many special needs kids have friends, let alone, one’s that call them their ‘best friend’ (tears). He shared the qualities about Owen with his teammates, words that will forever make me proud as a mom, knowing he is a good, kind child to others. Then John shared how he felt the day Owen had surgery….. my heart stopped for a beat hearing these words….
He said, “the day of his surgery I was really scared because Owen wasn’t in school, he was just GONE.” At that point John (and me) got very teary eyed and I felt what he was feeling…. As if to say what if he is “GONE” and not coming back…. (Curse you Duchenne for filling our hearts with fear and worry … Curse you Duchenne for stomping all over our childhood….) Oh this sweet child, in front of his peers, so willing to cry for the fears of his friend and this dreadful beast of a disease.
I just can’t describe how I felt exactly listening to John. But when he was done, most of his teammates were tearing up, and I knew that Owen will always be loved by this group, not just as the 24th player, but as ‘one of the best friends I’ve ever had.’
God Bless you
John said Owen was one of the best friends he’s ever had. Not many special needs kids have friends, let alone, one’s that call them their ‘best friend’ (tears). He shared the qualities about Owen with his teammates, words that will forever make me proud as a mom, knowing he is a good, kind child to others. Then John shared how he felt the day Owen had surgery….. my heart stopped for a beat hearing these words….
He said, “the day of his surgery I was really scared because Owen wasn’t in school, he was just GONE.” At that point John (and me) got very teary eyed and I felt what he was feeling…. As if to say what if he is “GONE” and not coming back…. (Curse you Duchenne for filling our hearts with fear and worry … Curse you Duchenne for stomping all over our childhood….) Oh this sweet child, in front of his peers, so willing to cry for the fears of his friend and this dreadful beast of a disease.
I just can’t describe how I felt exactly listening to John. But when he was done, most of his teammates were tearing up, and I knew that Owen will always be loved by this group, not just as the 24th player, but as ‘one of the best friends I’ve ever had.’
God Bless you
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