| EB-ONE is very much in the beginning stages, but with some help, we hope to provide a common place for EB families of New England to comfortably express themselves and share their experiences. Along with being able to talk with others who are or have gone through similar experiences, we hope to create less of an alone feeling that EB creates because of it's rarity. The communication between families can help spread the wealth of knowledge that may help improve the care and quality of life for someone else that suffers from this devastating disease. |
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| PLEASE FEEL FREE TO SEND US ANY SUGGESTIONS. EB-ONE |
| EB is Unknown to most, but as ONE we can spread our wings and fly..... |
If you are interested in joining or assisting the group, please contact us by any of the below routes.
Contact Info:
email EB-ONE:
Troy & Melanie Medeiros
Methuen, Ma
Email: tmedeiros@everlastingbutterfly.com
mmedeiros@everlastingbutterfly.com
email EB-ONE:
Troy & Melanie Medeiros
Methuen, Ma
Email: tmedeiros@everlastingbutterfly.com
mmedeiros@everlastingbutterfly.com
| www.EverlastingButterfly.com Yahoo Web Hosting |
A Message from the Founders - Troy & Melanie Medeiros
We are the parents of five beautiful children, one of who we lost to EB. In
July of 2004, Melanie gave birth to a beautiful little girl named Ava
Elizabeth. She did not have any skin on her right elbow, and had a large
lesion on her lower abdomen. She lived her life in the NICU at the
Children's Hospital of Boston, and passed away in November of the same
year. Our daughter taught us more than we could have ever imagined,
which has really inspired us to help others. Spending the four months in
the hospital with her, opened our eyes to the number of families that are
struggling everyday. We learned so much about EB, and what we have
come to realize is that the only people that really know of EB are those
who have lived it. Dealing with EB is hard enough, but feeling like you are
alone just compounds it. So we have been dedicated to help spread
awareness through our daughters website www.EverlastingButterfly.com,
fund raising events, along with providing support. Ava has changed our
lives forever through her sufferings, and we owe it to her to help those
who suffer from EB.
Sincerely,
Troy & Melanie Medeiros
We are the parents of five beautiful children, one of who we lost to EB. In
July of 2004, Melanie gave birth to a beautiful little girl named Ava
Elizabeth. She did not have any skin on her right elbow, and had a large
lesion on her lower abdomen. She lived her life in the NICU at the
Children's Hospital of Boston, and passed away in November of the same
year. Our daughter taught us more than we could have ever imagined,
which has really inspired us to help others. Spending the four months in
the hospital with her, opened our eyes to the number of families that are
struggling everyday. We learned so much about EB, and what we have
come to realize is that the only people that really know of EB are those
who have lived it. Dealing with EB is hard enough, but feeling like you are
alone just compounds it. So we have been dedicated to help spread
awareness through our daughters website www.EverlastingButterfly.com,
fund raising events, along with providing support. Ava has changed our
lives forever through her sufferings, and we owe it to her to help those
who suffer from EB.
Sincerely,
Troy & Melanie Medeiros
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www.EverlastingButterfly.com
| EB is Unknown to most, but as ONE we can spread our wings and fly..... |