Duchenne Awareness Day

Duchenne Awareness Day

On Sept. 7th families all across the world are observing Duchenne Awareness day. But if you were to ask any of us, we’d tell you it’s not just awareness we’re after; what we want is a cure.

Danny Boy Duchenne Awareness

If you’ve never heard of Duchenne, also known as DMD, you’re not alone.

Duchenne is a rare and fatal genetic disorder that affects 1 in 5000 boys. One of those boys is our youngest son, Danny Boy. You can learn more about DMD by visiting the Parent Project.

Every boy with Duchenne is unique and progresses differently. For Danny Boy, he’s progressed quickly. I could list the surgeries, the many doctor appts, treatments, and machines he depends upon, but the bottom line is that he needs a cure.

 

Duchenne Awareness

Danny Boy Duchenne Awareness Day

Danny and all the other boys with DMD need a cure.

Danny and all the other boys don’t need more treatment; they need a cure.

We aren’t trying to be ungrateful.

We’re thankful for the treatments and the advancements in care.

We’re grateful for the resources invested, and the time you’ve spent so far.

We just ask, please don’t give up. Keep going, because we need a cure!

This disease isn’t waiting for anyone to figure out the costs. It’s not discriminating on the next boy who’s lost.

The progression of this disease is happening right before our eyes.

As parents, advocating for our sons, we plead with you to hurry because we can’t fathom the thought of our sons losing this fight.

Speech

With a heart of gratitude

To the countless people in the trenches fighting for a cure, from the researchers, physicians, therapists, advocates, and many others, thank you.

I know you must get tired, frustrated, exhausted, and even mad.

I understand.

Please keep fighting, and know you’re not fighting alone.

I may not be on the steps of the Capital advocating by your side. I may not be in the lab working on the latest gene therapy with you, but believe me, when I say, I’m fighting right alongside you!

I’m fighting insurance companies, feeding machines, breathing machines, and medical equipment galore.

I’m fighting the fear of “what if” and to be honest, some days I’m just fighting to keep it all together.

Emergency Room

Duchenne Dreams

Wouldn’t it be nice if someday we could say, “Back in the old days’ boys born with DMD died without a cure- not anymore!”

Wouldn’t it be nice to see these boys grow into men who took their place in society as leaders, influencers, and the world-changers they are?

Duchenne awareness isn’t just about dreaming of what could be.

No, it’s more of a plea, don’t forget these boys.

We can all fight to find a cure.

Join the Fight. End Duchenne.

You can learn more about Duchenne (DMD) by clicking on any of the links in this post. Parent Project is leading the fight to end Duchenne.

Will you join us and help find a cure?

You don’t have to be a scientist, researcher, physician, or philanthropists.

We need all hands on deck!

What do you say? Will you help us find a cure?

Until our next chat,

Mrs. Joseph Wood

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7 ways to help parents of special needs children

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When your friend has a child with special needs

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I sit listening to the giggles and imagination play from across the room. My granddaughter, Miss Emmy, and Danny Boy (my youngest son who has special needs) are playing. I can hear the exchange of ideas between the two of them. As I peek around my desk, I see Emmy pick up a toy Danny dropped and hand it back to him, without skipping a beat in her conversation. Danny continues to play as well; it’s as if they both are oblivious to the inconvenience of Danny’s limitations. (more…)

Special Needs Parenting: 10 things I wish everyone knew

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Special needs parenting is messy. You can have it all together one moment, be on top of all the appointments, changes in medication, activity schedule, insurance issues and then… BAM! You discover you’re not on top of any of it. As a special needs mom, I’m baffled by this reality. I can’t imagine what people around me must think. As I was pondering this situation tonight I thought, “I wish everyone knew…” (more…)

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