Sunday, September 29, 2013

September 29, 2013: Meet our friends and neighbors, HEAL EB!


Holy cow.  Boy, is summer over.

What I'm specifically referring to is the pace of fall... back to school, church school, brownies, music lessons, etc.  We are r-u-n-n-i-n-g from week to week right now.  Don't ask me how we are planning anything if it is more than a week out.  We don't have an answer!  LOL.  Tuesday was school pictures already!  Friday was school campout, Saturday was Church concert at our regional retreat center... feeling like a gerbil on a wheel right now.

Please tell me this is happening to you, too?

Speaking of questions, thanks for the responses to my latest question!  I inevitably pushed a few buttons in my effort to hear from you all who have walked with us for so long.  Over the past two weeks, I've asked very specific questions in an effort to just hear more about who you are and what you are up to.  I like conversation because it's interactive.  Blogging isn't quite the same, and I'm going to try on my part to continue to ask questions to spark dialogue... and I promise to tone it down and retire the "lurker" comment.  It's a word that can actually be taken offensively, and even though I don't mean it that way, consider it retired.

Back to the subject of this post.  Meet our friends, Heather and Ryan Fullmer!  They founded Heal EB, a non-profit to fund EB research and raise awareness.  Their son, Michael, has EB.  They are from northern California, but recently moved down to Orange County, where we live, and are really only about 15 minutes from us!

We had the chance to get together a while back for breakfast and I think I might have mentioned them before.  Michael is absolutely adorable, and it was great to see Ali and him play, since Ali is a vet when it comes to hanging with a kid with bandages.  She didn't even bat an eye.  Ryan and I have been keeping in touch pretty regularly and they are throwing their first EB awareness event down here in Orange County coming up in early October.  If you live here locally, will you consider coming out and supporting them?  Unfortunately, Angelique and I will be out of town at Ang's little brother's wedding in Florida, so we can't make it.  However, it's at the Discovery Science Center, which is always a fun day/night out for any family.  If you haven't made a trip there recently, please consider making your pilgrimage there for this event so we can help continue to support EB research!

You can learn more about them at

God night!

1 comment:

  1. I lurk. And I learn. And your words soothe my often hurting soul. I wish I had wise words to repay you, but I do not. So I read yours and, while I grieve with you over your loss, I rejoice with you over your triumphs. Your blog is a treasured read. I love your music therapy, your kind Ali, Ang, and energetic Julien. And every time I see colorful socks, I am reminded of Bella. Her lessons are part of my heart. Would you mind if I go back to lurkdom, keeping all of you quietly close? If not, well, I will do my best to check in on accession.