In February I found myself wondering what we could do for Rare Disease Day, how we could reach a broader audience with information about Batten Disease. I've been reading This Little Miggy Stayed Home for a few years, and have enjoyed the special needs spotlight series Miggy shares each week. I wrote to ask whether she'd consider a posthumous spotlight. We're there today, sharing Celia's story. If you read here, you already know it, but perhaps you'd like to visit Miggy anyway. She documents some of her own creativity - sewing and painting and decorating - but she mostly features her daughters in her writing about day to day stuff. We're so grateful to Miggy for sharing her space and allowing us to stretch the circle of people who know about Celia, and about Batten, a little wider.
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3 comments:
Hello
Thank you for sharing Celia's life with us on Miss Miggy. I really like her blog and admire her for giving children with special needs and their families a voice.
A lot of parents spend time complaining and whinging about their children but they are so precious and such a gift and your story reminds us of how short the journey can be.
The photos of Celia were beautiful. What a gorgeous child. Her hair was divine.
Best wishes x
Celia, I remember you.
And remember
and remember
and remember.
xo CiM
I love this Miss Miggy...and you. What a beautiful thing.
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