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| ISABELLA & OLIVIA CLICK HERE FOR.. UPDATED 1-25-08 OLIVIA'S VIDEO!! "YOU CRACK ME UP!!" CLICK HERE TO READ ABOUT THE PGD & IVF PROCESS, AND BELLA & OLIVIA'S ARRIVAL. |
| SITE DIRECTORY Butterfly Garden - A page that summarizes what the site is about, along with expressing our expriences with a few organizations, medical staff, family, friends, and websites through the most difficult time of our lives. Ava's Story- The story of our daughter's fight with Epidermolysis Bullosa. The Tree- A page where you can meet Ava's Family thru a gallery of pictures. Gallerfly- A gallery of pictures of Ava along with family, friends, and the medical staff. Ava Flyby- This page where Ava leaves messages relating to a family or friend's birthday, anniversary, or any special occasion. Ava Fun Facts- A page that states all of Ava's favorites along with some of the artwork that was created for her. Thoughts In Words- This page was created to display some of my writings that were inspired through Ava's journey. Wings of Love- This page is a forum for other EB families or patients to share their story and pictures. THE LINX - A page that contains links to personal EB sites. EB Billboard- This is an informative page that lists several EB links, Charities, Fund Raising events, and Current EB affairs. EB POST This page is updated frequently with EB NEWS LINKS that are going on throughout the world. EB Friendly Products- The link for this page is located on the EB Billboard and EB@EB.com. It advertises several products that are EB Friendly, such as shoes, childcare products, and more. EB@EB.com- This page is to educate the public about Epidermolysis Bullosa. It explains what EB is and does. It does not go into extensive detail, but it does contain various links that do. EB-ONE (EB of New England)- New EB Support Group for families located in the Massachusetts, New Hampshire, and Rhode Island area. WHATSUP?- This page is set up to keep everyone up to date on what EB.com is up to. Contact Us- The contact page is set up to allow others to communicate with us. Whether it is a question, story, picture, concern, or even a request for us to link there site or advertise their benefit. We are want to help as much as possible, so we hope to hear from you. Build Hope- This page list a few organizations that are dedicated to assist EB families and improve the quality of life through programs, support, and research. These non-profit organizations need everyone's help in order to provide these services. Whether it is a dollar donation or volunteering your time, please become an EB Builder of Hope!!! Remember When- This is a page where family and friends can post anniversaries, birthdays, engagements, etc. |
| LATEST UPDATES: AVA'S STORY 11-17-06 Header Design Change GALLERFLY 01-09-07 Added pic of Deb P and Ava EB BILLBOARD: 01-26-2010 Butterfly Benefit March 27th, 2010 EB POST Updated 9/6/09 Rock Cats go to bat for child in need Bristol Press Butterfly skin won't keep me from school Central Europe draw up rare diseases battleplan France24 5K Run/Walk honors memory of Macie Majeres Team Kyle Nears Fundraising Goal THOUGHTS IN WORDS 7-14-06 Ava's 2nd B-Day Anniversary Poem to Mom AVA FLYBY 07-07-07 Happy Birthday Dev, Olivia, & Isabella Wings of Love: The LiNX 04-30-07 Added link to www.BeautifulDaisy.com EB Contacts May 2005 Added more email address contacts The Tree 03-10-09 Added pics of Devin and McKenzie EB@EB.com 05-04-08 Alfred Lane, MD, Discusses EB Research and Treatment Video Link Spread Your WIngs 03-27-07 Welcome Erin Pimentel as new contact for EverlastingButterfly.com EB Friendly Products 03-09-09 Added link for Hollister Wound Care EB-ONE 03-27-07 Founder Information Updated WHATSUP? 01-09-07 EB Awareness Video and Jennifer D. Golf Tourney Update BUILD HOPE 08-26-06 New page NOW AND THEN, REMEMBER WHEN 11-20-09 Dad & Ava's Anniversary Pic |
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| AWARENESS IS THE KEY TO SUPPORT, WHICH IS THE KEY TO FINDING A CURE! |
OUR FIRST SUPPORT GROUP 2/5/06- LEARN MORE
| EBInfo.Homestead.com Through the Eyes of a Patient |
| All profits from the sales of All Pro Sunscreen will be donated to the Western Horizon Ranch for Kids with Serious Skin Diseases. |
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| LESLIE RADER & MELANIE MEDEIROS LESLIE RUNS THE NEW FAMILY ADVOCATE PROGRAM FOR DEBRA. READ MORE ABOUT LESLIE ON THE EB BILLBOARD AND HER DAUGHTER LAUREN ON THE WINGS OF LOVE. |
| WALK A Mile in My Shoes Relay Ralley!! EB Awareness Week - October 25th - 31st. Learn more about the relay and how you can help at www.ebrelay.org |
A Monsta Midget Design
www.EverlastingButterfly.com
Living with Epidermolysis Bullosa has first-hand accounts written by
parents and patients who are living or have lived with EB, and was
compiled to help people in general understand how it is like to truly live
with every form of Epidermolysis Bullosa; from the milder Simplex
variants, who are nonetheless not simple to live with, to the more lethal,
namely Junctional, whose patients usually succumb to before their first
birthday. The stories you will read are from proud parents, or patients
and their struggles and how they are coping. Some stories are sad, some
are encouraging, and everything in between.
parents and patients who are living or have lived with EB, and was
compiled to help people in general understand how it is like to truly live
with every form of Epidermolysis Bullosa; from the milder Simplex
variants, who are nonetheless not simple to live with, to the more lethal,
namely Junctional, whose patients usually succumb to before their first
birthday. The stories you will read are from proud parents, or patients
and their struggles and how they are coping. Some stories are sad, some
are encouraging, and everything in between.
AVA'S STORY IS ONE OF MANY IN THIS BOOK.....
| CLICK HERE TO LEARN HOW YOU CAN HELP BY BECOMING AN EB AWARENESS SUPPORTER!!! |
| Christina we love you and you'll forever be remembered. 24 YEARS YOUNG |
| OCTOBER FUNDRAISER "FOR AVA NIGHT" RAISES OVER $13,000 for |
| THANK YOU TO ALL OUR SUPPORTERS, VOLUNTEERS, AND EVERYONE WHO ATTENDED. |
Visit us at www.myspace.com/avanight
"Fragile as a Butterfly's Wings"
Established March 2005
7-14-04 to 11-20-04
