Today, relatives and friends celebrated the life of yet another child lost far too young to Batten disease at a memorial service in her hometown of Columbus, OH. Celia Betz – who, like my sister, Taylor, had infantile Batten disease, would have celebrated her fifth birthday in March.
The following appeared on the blog penned by Celia’s mom, Jenni, today:
“Please, though, don’t express condolences today. Please do this instead: Share a memory of Celia, or relate a lesson you learned from her. Tell us about something nice, something simple but kind, that you’ve done for someone in her honor. Give us, if you will, something to hold on to when we wish we could hold her.”
Jenni and Andy – I never had the opportunity to meet Celia in person, but I feel as though I came to know her through your blog. And perhaps because you’ve always told her story so beautifully – or maybe because children like Celia and Taylor are just amazing on their own – her courage always managed to lift me up when I’d had a Batten day. Because no matter how bad things get, angels like your daughter and my sister are always worth fighting for.