2.28.2016

because hope

I feel like, through Batten Disease, we faced some of the hardest things a parent might ever encounter.
And then I think about having a second child with the disease.  How do those families manage?
Or an older child with the disease.  How do you even begin to explain to your child that she is dying?

The last day of February is World Rare Disease Day.
And a week from now, March 7th, would've been Celia's 9th birthday.

We've been celebrating what would have been and spreading Batten awareness with a note similar to the one below, sharing her story along with small, copper feather keychains.
Remembering her “with feathers” this year.
Because hope is the thing.

Feathers, from any bird, are important in Native American culture, used often in medicinal rituals. Feathers are believed not to belong to anyone but the birds from which they originate - creatures, small but fierce, who are members of the upper world, the space that separates heaven and earth. 

Our family believes in a cure the way some folks believe in a higher power.  It’s out there, somewhere.  We’re asking you to believe with us.  Our daughter died, but the future deserves our faith.

Feathers lift, insulate and protect. For some, they are a symbol of reassurance, a reminder of our eternal connection to this world.  They can be used in natural magic to promote change. Feathers provide inspiration to soar to new heights. 

A cure for Batten Disease will be found.   Researchers will deliver the breakthrough we believe in. We’d love for you to believe in it, and back it, too.
To help fund vital research, visit www.bdsra.org

A disease may be rare, but hope should not have to be.
You don't need a feather keychain to carry her story in your heart, and to help us make hope the thing.

2 comments:

Mike Smith said...

Samantha (from one gorgeous redhead to another) has been in dayton children's 3 out of the last 4 yrs on rare disease day.She been coming here for 20 yrs, no cure. without awareness, there is no research. without research there is no cure. without a cure there is no HOPE.we must keep HOPE alive. God bless the soon to arrive new addition to your family.

rht said...

Yet another beautiful way to celebrate Celia and spread the word. Hope IS the thing!