May 13, 2010
May 5, 2010
EB Patient Care Conference Agenda
For those attending the patient care conference,
you can find the agenda here
April 27, 2010
In Garrett's Memory
Over 5 years ago I set out on a mission to help other EB families who recently had a child with EB. If I could just help(prevent) one family from going through the same tragic situation we went though, then I know I would have made a difference. So I became more active on the on-line EB groups, started my web site, and reached out to new families. To date I probably have spoken with, emailed, visited or communicated though the various on line EB group with over 100 families in the past 5 years. Many of these babies I have seen grow up into adorable little kids; others sadly, are now with Garrett running around Heaven EB Free. While all those deaths were tragic, some of them hit a little closer to home than others. A few times I have come close to just walking away from it all; sometimes it's just too much to take, but most days I think, how COULD i just walk away? Until there is a cure for everyone with EB, there will always be new EB babies and their families will need all the support they can get. Plus I have gained a lot of great friends from the EB community that I wouldn't have otherwise met. And as fellow EB mom put it
"The sadness is sometimes too much,
but the benefits/relationships/rewards are even greater"
But in doing so, I need to make some changes. One of which is that I have decided to move the site from the other web address to this one. It is for many reason; mostly because of cost. This site charges nothing to have a blog/web site. Where as the service I was using before was $130/year! And despite the hundreds of hours of work I put into the site, I just don't have the time to make it just how I want it. And it wasn't getting as much traffic as I had hoped it would. A lot of the ideas I had and continued to come up with were also ideas others have come up with and implemented them much quicker on other groups and sites. Now if I were to do them, it would look like I was copying the same idea. So I have decided it would be best just to move the site to here. Its all the same information as on the old one. Just laid out differently. There are some things I like better on this site than on the other one, but I will also lose some of the things I liked a lot on the other site. But I think it will be a good change and will still serve the same purpose that I had 5 years ago when I first created Garrett's House.
One plus is that it will be easier for others that visit the site to see the most recent updates because the post go in date order. This site will strictly before EB information and if you want to read about my family and see current events, pictures and updates in our lives, feel free to check out my personal blog- Three Busy Bees and Two little Butterflies- I post updated and pictures of the girls as often as I remember too!
So finally after a week or so of design work, copying, and moving pages, I finally got to the "I am good with the layout of this site" point. I am so picky when it comes to certain things; they have to be just right! I'll probably change somethings around at some point; if I find a template I like better or a different back ground. I'll add more pages on EB as time permits. There are so many other topics I want to touch on.
But for now I am satisfied with how this site designed and lay out! So take a look around, click on 'follow this blog' at the top (preferably publicly so I people actually read my blogs:) and let me know what you think! Also feel free to link me to your blog or web site and if I am already linked, please change the link from www.garrettshouse.org to this one which is http://ingarrettsmemory.blogspot.com
If you'd like to add a button to your blog or web site for Garrett's house, let me know and i'll send you the HTML code.
The other web address will no longer be valid after May 5th 2010.
Thank you to everyone for the support, advice and opportunities you have given me in the past 5 years!
April 26, 2010
Personal Pages of others with EB
A handsome little angel named Jameson
Keric: the 4th EB patient to receive the bone marrow transplant
| Hannah: The 5th EB patient to receive the bone marrow transplant |
Evan: A happy little guy with Junctional EB
Little Lady Leah: An Angel in Heaven
Cristina's Story : "Through the eyes of a patient"
Everlasting Butterfly : In memory of an Angel named Ava
| In memory of Xantha Maree Marshall |
Fallyn: the 6th EB patient to receive the bone marrow transplant
Samantha: the 7th EB patient to receive the bone marrow transplant
| Rafi: the 8th EB patient to receive the bone marrow transplant |
McKenzie:the 9th EB patient to receive the bone marrow transplant
| Bruce and EB : "An Adult living with RDEB" | |||||||||||||||||||||||||||||||||||||||
The story of an angel named Janna
| Oxlee's Place |
| Jonathon's Story |
| Jamie Gibson: An Ethereal Suite |
Jessica and EB : A girl from the mid-west living with RDEB
Beautiful Daisy: A spunky little girl with Junctional EB
John-Hudson and EB : The stroy of a little boy in NYC living with RDEB
| Grace : An Angel in Heaven |
| An EB Angel named Jennifer |
**if you'd like your page added on her, please let me know and i'd be happy to include it!**
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