As we've mentioned, June 5th and 6th are national Batten Disease Awareness days.  Our family filmed a video for the Children's Miracle Network Telethon, also June 5th and 6th, to promote both the positive experience we've had with Nationwide Children's Hospital Hospice and Palliative Care, and to, hopefully, bring awareness of Batten Disease to telethon viewers who may have otherwise never heard of it.
It's hard to think of words like pediatric in combination with words like terminal.  It was difficult to sign the papers, more than a year ago, that would enroll Celia in Hospice.  More recently, it was tough for us to make the telethon video.  It is undoubtedly challenging for Hospice providers to do their jobs, dealing with the realities of life-limiting childhood illness on a daily basis.  None of this is easy, for anyone involved, but the miracle Hospice has shared with our family has been peace in the midst of pain.

We also find it hard to encourage people to watch us snivel through four minutes of film, but Celia is the star, and we know you'd like to see her shine...  If you're able, you can watch the Telethon on WBNS 10TV, with local segments airing live on Saturday evening from 8pm to 11pm (we've been told Celia's feature will likely run during the 10pm hour...) and from 9am to 1:30pm on Sunday.
We'll try to make the video available after the telethon airs, for folks who are unable to watch it live.

If you're interested, you can make a gift to NCH online or by calling (614) 460.3800.
To read more about NCH's affiliation with the CMN Telethon, visit this recent press release.  


Adam and Vicky said...

Thank you for sharing the details!

The Wendels said...

Programming the DVR now! And, thank you for letting us into your lives when at times I'm sure you'd love to slam the door, close the curtains, and turn off the computer.

Miriam said...

I hope that Batten gets the attention it deserves through the telethon. Thanks for letting us know when it'll be on!

Debi said...

Is there a way to see your spot on line? I would love to watch it.

Beth Ann said...

Just watched Celia's story. I found it at www.10tv.com I went to the Children's Miracle Network link, clicked to make a donation online, and then went to view a miracle. There you can find Celia's clip. It was beautiful, bittersweet, but beautiful.

Miriam said...

It was beautiful and heart-breaking at the same time...your family's strength amazes me. Keeping you in our thoughts and prayers more than you know.