Rob Maloney: How Our Camp Brings Relief to Children with Bleeding Disorders and Their Families
Rob Maloney, Chief Executive Officer of Hemophilia of Georgia, shared on LinkedIn:
”We talk a lot about what our camp does for kids.
And we should. It matters on a lot of levels.
It gives them courage, belonging, freedom and so much more.
It’s a chance to stop feeling like the only one.
But one of the most honest things I’ve heard about camp came from a parent.
She didn’t give me a polished speech. She just said, in her own way, that camp gave her a week to breathe.
Parents of children with bleeding disorders do not really clock out.
They are always aware. Always watching. Always running scenarios in the background.
- What if he falls?
- What if she starts bleeding?
- What if the school doesn’t know what to do?
- What if we’re out of town?
- What if I miss something?
Even in good seasons, that kind of vigilance takes a toll.
So when a family trusts our camp and they know the doctors are there, the nurses are there, the counselors understand, and their child is safe, something rare happens.
The child gets to be a child. And the parent gets to exhale.
That is not a small thing.
In rare disease care, we often focus on the patient, and rightly so.
But families carry this too.
Parents carry it in their bodies, in their schedules, in their sleep, in their relationships and the way they move through the world.
Sometimes one of the most meaningful things an organization can offer is not just another meeting.
Sometimes it’s a week where everyone can breathe a little easier.
We can’t wait for camp!”
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