Well, another good day in Dean's Lab today. Man, just being around Dean and his clutter-free, focus-oriented office really makes for some productive work!
The AM was the hard part.
Today, I finally got up the nerve to watch some of Jonny Kennedy's series, "The Boy Whose Skin Fell Off," on youtube. I was afraid to watch it, even though I've known about it since Bella was born. With Bella, I never wanted to look ahead too far at older kids or adults with EB, because I just didn't want to face that future.
Well, last night, we came to the realization that a video that shows the problem, the solution, the results so far, AND a call to action was needed. Just about all the EB videos online share one thing: they raise EB awareness, but stop short of asking directly for a contribution. Now, I know not all EB videos online are designed to raise money. Many of them are specifically just for awareness, and that is VITAL, but so is asking to raise money. Advances in treatment come from research, and research costs money. So, we are going to make a video specifically designed to raise awareness, get people emotionally connected, and raise money. That way, when I do end up on TV and radio, all I have to do is say, "Please go to ebhope.com to help out." That's easy enough to remember. The person goes to that page (which currently points here to the blog but will be pointed at a fresh new page) and sees a big video screen and a donate button under it. That's it. Clean, clear, simple.
I was online this morning seeing what is already out there in the "youtube literature." There is one, two-minute segment I watched today from Jonny's show that made my blood freeze. I've only made it through 20% of his show, but it was so intense I had to stop. After watching his mum do bandage changes on him 36 YEARS AFTER HIS BIRTH... I couldn't contemplate it. My brain hurts now even. Many of us don't show the bad videos and the bad photos online, but the reality is that this disease is much worse than any of us show through video or photo. We may write about it, but most of us simply won't show you how bad it got for our little ones. In some ways, this leaves an inaccurate portrait of EB. Inaccurate because there is only so much we can imagine on our own. EB is worse than you imagine.
There was a scene of Jonny's bandage changes and it was worse than I could imagine. Seeing the video of Payton on "My Skin is Killing Me," seeing his torso and legs, hearing his screams getting in the bath... worse than I could imagine, and I'm an EB parent! Some diseases kill you from the inside out. EB kills from the outside in. It attacks the largest organ in the body. The two minute clip of Jonny's bandage change is more powerful than 100 great lectures, seminars, or speeches.
The good news was that the U of M has produced 4 really good, informative videos on this treatment. They don't hit as hard as Jonny's video; they are more upbeat and academic in nature. It was nice watching the U of M video knowing we're coming back this week.
Prepare! Prepare! The Ringgolds are returning!
LOL
I spent much of the evening coordinating our (social) itinerary today. The Minnesota Medical Foundation was nice enough to coordinate a meeting itinerary for our stay that is quite thorough. We feel so great working with them, they are a class act! The key for me is learning how to connect major donors with them and vice versa. That is going to play a big role in us raising such a big number. However, every role is important... remember... President Obama raised more money than any politician in history $5 at a time. His "Micro-donations" were completely revolutionary. It's hard to predict what movement or cause will "go viral" online, so it isn't yet duplicatable enough to control it, it just kind of happens. That's okay, we'll still do whatever it takes.
Okay, eyes are shutting involuntarily as I type. Time for bed. Tomorrow, I return to my family!
I can't wait to be with them again.
God night.
awesome!!!!!!! Great post today Tim. But, I can't bring myself to watch the video. I just can't.
ReplyDeleteYour post really brings the "My daughter is gone but I am moving to help others...." feeling to your plight. I wonder if you feel paralyzed with your grief at times. Then I think, of course they do. So AWESOME.
GO GO GO GO GO!!!!!!! Very exciting.
Ok, I did watch 1/5 and 5/5.
ReplyDeleteWow.
I think you are going to raise so much money and what a difference it will make. AWESOME and I believe good is around the corner Tim and Ang!
You are right, Tim, we all simply don't want to scare the world,showing the "bad" photos. I remember how shocked I was to see the first wounds, I don't want to cause this to other people. I hope you will find the balance, because if your video is too terrible noone will be stupid enough to watch it.
ReplyDeleteGood luck with your plans!
Elena
Wow just finished watching Johnny's story, what a man!
ReplyDelete- Bee
All I can say today is Happy you are getting so much done!
ReplyDeleteI read EJ's caringbridge page and a few otehrs - heartbreaking!
Tina
I had to have some medical photos done of my wounds for my disability insurance. I got copies of the photos and it was hard for ME to look at them. It was hard for ME to look at pictures of wounds that I dress every day! it was hard for ME to look at my own skin.
ReplyDeleteTruth is, it took me almost a month to watch the video that you posted on facebook of your speech. I knew it would make me cry and of course it did, but ultimately it helped me after 36 years really explain EB to the point that I "think" some people are starting to "get it!".
Thank you for everything you are doing for EB!
Oh my gosh just finished watching the whole video. I am a Minnesotian that have been following your story and the many other children with eb. Like many, you don't even know me but yet I feel that I know your family and events that you have endured over the past months. God bless you and all the eb familys. You and your family will get to experience a real Minnesota winter and all the joy that snow can really bring to a person. Ever heard of a snow butterfly?:)Give it a try.
ReplyDeleteI too watched the Jonny Kennedy video and it was heartbreaking. It also moved us to action. It was that video that finalized our decision to adopt our son AJ. At that time we wanted to "see" the worst so that we would know what we were getting into. I think every bit of information that is out there has a purpose and I encourage you to keep pursuing the dream and vision that God has given you. The other think I liked about Jonny was his sense of humor. He suffered so much but he also accomplished many things that he wanted to do. RIP Jonny.
ReplyDeleteBarbara and AJ (RDEB, age 3)
I saw Jonny's story a few years back on TLC, so when I met you at AMTA conference I immediately knew what you were talking about. It was one of those shows that I always remembered because I felt that Jonny handled everything with such grace. What an incredible story!
ReplyDeleteMichelle K.
The Colony, Tx
I've seen the documentary about Jonny two times already, but might watch it again.
ReplyDeleteIt brings a smile to my face, to read about all the things that you are doing, all the things that will brighten the future of sooooo many individuals and families.
Sorry I haven't checked in in a while, but I'm praying for you and Ang and Ali.
Blessings,
Jennifer
Sweden.
I just watched Jonny's story. Wow!
ReplyDeleteOMGosh. The PAIN. I am in awe at the strength the parents of EB people have and the devotion....just in awe. It makes my physically ill to think of the pain these people go through. I'm so sad to think of any child to be in such pain......
ReplyDeleteTim - I think you and your friends will find a way to convey what needs to be conveyed to raise the money. I know you can do it.
I think I'll have to work up to watching Jonny's story. I saw Payton's on TLC and the screams during bath were gut-wrenching. And I'm not an EB parent!
ReplyDeleteI won't speak for everyone here, but it's really easy for me to underestimate this disease. I was reminded of this when I read McKenzie's mom's latest post - her sweet legs are in such bad shape. Nobody should have to hurt like this!!
Praying that God will open the doors and that He will show you His plan for raising money. And of course praying for you, Ang and Ali. Thanks again for sharing so openly with us and for posting the sweet Bella pictures!!
Love from TX,
Laura (for Team A)
You know I always come here first thing in the morning just to be inspired. I can not donate anything right now as were broke, only have internet because we are both online college students. However, my new job should start by the end of Feb, God willing everythign lines up right. I will donate ten dollars out of my very first paycheck in honor of Bella. I know its not much but right now food is even hard to have money for, but its ten dollars that will add to others five or ten or one or two.
ReplyDeleteCan I also ask that you keep my husband in your prayers tomorrow. Its horrible weather here in Ohio very nasty ice storm. He has to travel back country untreated roads over one hour in good weather one way up hills and turns and nastiness to get to work. Tomorrow will probably take him two hours at least to get there. After being in a car accident last year and being injured badly along with my youngest daughter and myself and months before that being ran off the road and knocked out for a little bit, NONE OF them his fault both other drivers fault one hundred percent. It worries me so much him on the road when its nasty.. Im so worried tonight im not sleeping and our kids are all ready out of school today and tomorrow.
Thanks
Christy
momto3daughters at hotmail.com
Despite being an avid Discovery Health channel fan (well, now it's OWN)... I'd never seen Johnny Kennedy. I just watched episode 1/5. What an amazing man! Thanks for sharing his story.
ReplyDeleteBest,
Cara