Monday, October 24, 2011

Welcome EB Awareness Week!!

So I'm a day early, but I'm way too excited to wait. 
So are you ready to Be Part of the Cure??

This week is not just about Tripp. It's about everyone who is living a life with EB and their loved ones.
All of you know how sad I feel for Tripp and how much I wish I could take this from him, but what about the others?  The children, teens, and adults living with EB who ARE actually able to "go out into the world" and have to function in an every day life with EB.  Maybe the ones who get stared at, ridiculed, and get treated differently because of the way they look.  Those who want to stop the person who stares at them and try to explain their world of pain- but never have the chance to because no one cares enough to take the time to listen.

I want that to change.  And in all honesty- not only for EB- but for every disease and disorder out there. Who are we to judge? Who are we to stare? Just because we are healthy, does that mean we are perfect? Does that give us the right to think that we are better than anyone else?

I'll be honest, I often times think that we have the worst of the "EB" world... Because of the fact that Tripp has suffered through every possible affect of this disease- the trach, the feeding tube, the corneal abrasions and eventually losing his vision, the mouth sores, constant infections,  etc etc.  But when I really stop and think about other kids and adults living with EB, I know that every one of them is carrying a horrifying cross, each in a different way.  I often wonder if we are blessed that Tripp doesn't have to worry about what others think about him- because he doesn't know better yet (not saying that will never happen, but at this moment). I think about the school-aged kids who live with this disease every day and have to worry about what people think every time they walk out of the house. Or the adults who have to function in the "work" world and in the "real" cruel and judgmental world.  Do those people have a community of support and people rallying for them as well? If not, can you imagine their pain?

This is the worst disease in the world- and no person, child or adult, should have to suffer like this- physically, mentally, or emotionally.

I want every person in the world to know what "EB" is.  I want them to see someone with EB and say, "God bless you," or "Can I help you?" instead of sitting back and staring.  We all need to be educated.

Just like every disease, these children and adults did not choose this- they were chosen... whether they wanted it or not.  And it's something that currently has no cure and is not going away.  What are we going to do about that?

So please don't sit back (like I did before Tripp) and think that you are exempt from having a baby with a disease, a defect, or a disorder.  No one is exempt.  And if it didn't happen to you-  congratulations.  But what if it was to happen to your child's child?  Or a best friend's child, or just someone you know?  It would be devastating, right?

Our family has been abundantly blessed with support, kind thoughts, prayers, and fundraising.  We are forever grateful for this- more than I will ever be able to explain.  So since we have been blessed beyond words, it's my job to bless others- my job to help others.  Those who don't have a voice. Those who are living with EB who don't have the support that we have. Those who want people to know WHY they have sores and bandages all over their body.

I won't stop- not this week, this month, this year, or in my lifetime- spreading the word about this horrible disease and doing what I can to make the lives of these children and adults a little easier.  I'll do it for Tripp, for those who have lost their precious lives too soon, for every single person currently living with EB, and for every child that will be born with EB in the future.

Whether they are fighting to survive just one more day physically, or fighting to survive one more day mentally.  Every one of these children and adults deserve to be heard and deserve their voice to be heard. So please... Find someone who will listen- tell them about EB- and tell them to tell someone else about EB.

And no matter what happens, I will keep fighting.  And I will encourage you to fight with me.  I encourage you to be a part of something bigger, something worth bragging about. Something that makes you feel good. Help us... help all of those with EB.  Be a voice for someone who doesn't have one, for someone who never had the chance to have one, or for someone who is aching for the world to recognize them for who they are and not "what's all over their skin."

How can you help?
"EB" a part of the Cure by joining the Facebook page HERE.
Create your own awareness page.
Post about EB on your Facebook page or blog.
Share the awareness video at the end of this post.
Educate yourself about EB ( is a great way).
Simply tell another person about EB.
Educate your children about EB so that they will be able to recognize it.

And like I said, we have been blessed beyond comprehension- and Tripp has obviously helped spread the word about EB in his two and a half years. So let's continue... Let's fight for those with EB...  Whether they are close in your hometown, across the world, simplex, Junctional, dystrophic, newborns, children, or adults... They ALL deserve this.  Please help me give those living with EB a voice and a chance for a cure.

I have never once asked any of you for money, but this was too brilliant to pass up- and there is no better time than now.

I know a lot of you know about the Bone Marrow Transplants that are going on in Minnesota, and how dangerous they were for babies under 1-2 years old.  These transplants took the life of some of these children, whose parents were hoping for the best.  Sweet Bella was one of those children.  Her parents, Tim and Angelique, are working hard with the team of doctors in Minnesota, trying to raise much needed funds through PUCK (Pioneering Unique Cures for Kids).
The doctors in Minnesota have changed the transplant regimen in the past year.  They have made it safer for these children and for these parents who want a better quality of life for their children.  There is still no cure.  But they are working. They are trying. These doctors are fighting for our kids.   You can visit this website to find out more about this research:
And here is what Tim proposed to me for this year's EB Awareness Week: 

A Text for Tripp

I thought this was awesome.  I mean, how many of us text like crazy people? I know I do!!  It's SO easy- all you do is text TRIPP to 50555 and a donation of $10 will be added to your wireless bill going straight toward EB Research through the Minnesota Medical Foundation at the University of Minnesota.  Cool, right? $10 a person can go a long way!! And you don't even have to take the time to pull out a credit card- it just charges straight to your wireless bill and does the work for you!!  Brilliant, right? Let's do this!!

Text Tripp to 50555 and help us END EB NOW! 
And then SHARE this video as much as you can to help us spread awareness about these beautiful children!



  1. Love LOVE LOVE this idea!! Texting now! Posted link to my facebook and I will blog it too!!! Hugs to your little man from Meme <3

  2. Great idea and you are so inspiring!!!!!! Thank you for doing what you are doing to bring awareness to EB.

  3. Donation sent via text and will post link on my facebook page and educate others about EB. Prayers sent your way!

  4. Love the video. So sweet. I'll share it on Daylon's blog too if that's okay. Love to you and Tripp!

  5. WOW, what a video! I have shared this on FB, twitter and will blog about it.

    Praying and praying,

  6. Spreading the word this week! Love you bunches Tripp! Prayers for you all.

  7. Courtney, YOU ARE a voice for so many that don't have one, including your sweet Tripp. Thank you for inspiring us all and reminding us that the saying, "To the world you may be one person, but to one person, you may be the world," is THE TRUTH. We love you, and thank you for sharing with the world you beautiful boy, and this horrendous disease. Our kids are changing the world! Love, Tim and Angelique

  8. just posted the video to my fb wall and am texting now. :)

  9. You are and Tripp are changing the world one person at a time. Sending you all lots of love and prayers.

  10. Thinking of you and Tripp always... and texted my $10 for all. God Bless

  11. Hurrah! I have a prepaid cell phone that I never use, but keep active in case of emergencies. It now has about $120 on it, and I am getting a new smart phone today. I have been looking for somewhere to "text donate" the balance. Talk about perfect timing. If I can, I will text 12 times.

  12. Hi Courtney: Leah's Nana here and to me EVERYDAY is EB awareness. After Leah passed I got a butterfly tattoo along with her beautiful name. So many people ask about it and I have a chance to explain what Leah went through. I am happy to spread EB awareness, one person at a time. Awareness equals a cure. Praying for your family and all the other EB families. Love you guys. Love Leah's Nana

  13. AARGH! The texting thing is not working for me, I don't know why. I have donated through text in the past without a hitch, but it is not working this time. Any suggestions???

  14. Is something wrong with the video because I can't play it on my iPhone or computer. If so hope they fix it soon. I even turned Off virus scan still just a block screen with a note by Courtney Roth?? Any ideas?

  15. Don't get it. The video is working now. Great video guess the site may have been over loaded because of the weekend.