| Welcome to EverlastingButterfly.com |
| EverlastingButterfly.com is a website that was set up in memory of our daughter Ava Elizabeth who passed away in November 2004, due to a rare skin disease called Epidermolysis Bullosa. This site is set up as a memorial for our daughter, but also to spread awareness of this rare disease. Epidermolysis Bullosa is known as EB. This disease causes the skin to be as delicate as a butterfly's wings. Therefore children with EB are known as "Butterfly Children". Our Ava, along with all EB Angels become Everlasting Butterflies. We hope you find EB.com informative, educational, and most of all inspirational. Sincerely, Troy & Melanie Medeiros |
| Butterfly Garden - A page that summarizes what the site is about, along with expressing our expriences with a few organizations, people, family, friends, and organizations though the most difficult time of our life. Ava's Story- The story of our daughter's fight with Epidermolysis Bullosa. Gallerfly- A gallery of pictures of Ava along with family, friends, and the medical staff. 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. This page also has a section called Ava Flyby, where she leaves messages relating to a family or friend's birthday, anniversary, or any special occasion. Wings of Love- This page is a forum for other EB families or patients to share their story and pictures. EB Billboard- This is an informative page that lists several EB links, Charities, Fund Raising events, and Current EB affairs. This page is updated frequently with EB NEWS that is going on throughout the world. 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. 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. |
| www,EverlastingButterfly.com Yahoo Webhosting |
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| LATEST UPDATES: EB BILLBOARD: 5-13-05 Debra gives 1.6 million for EB Research. 05-10-05 The Boy Whose Skin Fell Off WinsDirector's Award & Editing Prize 05-06-05 Fishing Derby to Benefit Marie Curie Cancer Hospice in Caterham and DebRA 05-06-05 Prime Television Raises $17,000 For EB 05-05-05 Rare Skin Disease Causes More than Medical Problems 05-05-05 Play eases pain for boy who lives under wraps Wings of Love: 04-29-05 Story of Garrett Denslaw EB Contacts May 2005 Added more email address contacts |