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| FLUTTER VIEW |
This website is a memorial for our daughter Ava Elizabeth Medeiros who was born on July 14th, 2004. Ava was diagnosed with a rare genetic skin disorder called Junctional Epidermolysis Bullosa with Pyloric Atresia. This disease effects 2 out of every 100,000 live births and is blind to race or gender. There are many forms of this disease, all of which have no cure. Children with this disease are known as Butterfly Children due to their skin being fragile as the wings of a butterfly, and EB is short for Epidermolysis Bullosa. Ava passed away on November 20th, 2004. She will live in our hearts forever, which defines the website title..... "Everlasting Butterfly" |
| Ava Elizabeth Medeiros July 14th, 2004 to November 20th, 2004 "A Butterfly in God's Hands" |
| AVA'S FAMILY |
Ava's family resides in Massachusetts, about 20 minutes North of Boston. She has an older sister and brother, McKenzie & Devin, and two little sisters, Olivia & Isabella. My wife's name is Melanie and I'm Troy. We have been married since 1998, but have known each other before high school. Ava has a Nana & Grammy, but both grandfathers are in heaven spending a lot of time with her. She also has many aunts, uncles, and cousins, who were so supportive during Ava's life. |
SENDING OUR LOVE TO THE BEST NURSES IN THE WORLD AT CHB The 7 North NICU |
Ava spent the 4 months and 7 days of her life in Children's Hospital of Boston. Although her experiences were not usually desirable due to her disease, everyone at Children's did everything possible to give her the best quality of life possible. From the Nurses at 7 North NICU, to the Doctors, Social Workers, and the PACT Team, everyone was incredible. If we had never gone through this experience, no one could ever truthfully gotten me to believe that you could feel comfortable leaving my child in someone else's hands at such a time of need. I can honestly say that I did, even my wife who is very protective. Through the fear, confusion, anger, helplessness, and every other feeling that we had, they were able to get us to a point where we could handle everything we were dealing with. Sometimes better than others, but we are here and are getting through. By involving us in so many key decisions, along with their consistently thorough explanations, we are able to feel that there was nothing that could have been done differently that would have changed the outcome. That by far is one of the most important things that they have done for my wife and I because it would be very difficult living with the guilt of feeling like we didn't do everything possible. |
Children's Hospital Boston 300 Longwood Avenue Boston, MA 02115 617-355-600 |
The Pediatric Advanced Care Team (PACT) assists the primary health care team, families and children with advanced illness to prevent, reduce, and soothe symptoms. They support treatment of the underlying illness and at the same time strive for optimal quality of life. Through a family-centered approach, they promote healing, comfort, and making childhood experiences meaningful. For Ava and my family they did all of the above and more. We are still in contact with them, and have actually are looking forward to working with them in the future to help others who are going through similar situations, along with familiarizing others with EB. |
| AVA & DebRA |
Debra was very helpful as an internet source for EB. My wife and I spent hours upon hours of learning about the disease. The information we retrieved from this site was a great help in the care of our daughter, for us and the medical staff. I also spoke with Madeline S.Weiner RN, who is DebRA’s Nurse-Educator. Madeline serves as a point of contact to assist new parents and patients, as well as to help healthcare professionals understand and work with EB patients. Ava was going through some really difficult times when we spoke, and Madeline answered a lot of the questions that everyone had. My wife and I are very grateful for all the work that she does for EB. |
DebRA is dedicated to finding a cure for EB, which affects 2 out of every 100,000 live births in the United States today. EB is a genetically based disease characterized by chronic, painful blistering. The skin and mucous membranes are so fragile that the slightest touch can cause severe blistering – inside and outside the body. Present at birth, EB affects men and women of all races and ethnic groups and sometimes, when there is no family history, it occurs as the result of a spontaneous genetic mutation. Today, there is no cure or treatment for EB, except daily wound care and bandaging. Genetic research is making progress towards treatments and a cure. Learn More About DebRA and EB |
| AVA'S CAREPAGE - Delicatebird |
The first 2 weeks after Ava was born were probably the some of the toughest times my wife and I haver ever gone through. We have such a great family and friends that were very concerned for us. So in those first two weeks, we were receiving phone calls after phone calls to check in and see how things were going. It was a time that we were trying to cope with everything that was going on, and repeating it numerous times throughout the day was at times very difficult. Once we heard of Carepages, we set up Ava's site right in Children's Hospital. It was the best thing we had done. It kept everyone up to date and on the same page. Along with being able to post updates, feelings, and pictures; family, friends, strangers were able to respond with messages of support. We received over a 1000 messages from over 300 visitors leaving their messages of support, and believe me when I say, we needed every bit of them. Even some of the nurses and doctors visited the site, which was an incredible feeling within itself. It also helped them to make sure that we fully understood what was going on, which was very important. Ava's carepage is still active, so if you wish to read more detailed information of Ava's journey you can visit her page at www.carepages.com. Her carepage name is "Delicatebird". You will be asked to register at no cost, it just uses your information to add you to Ava's guestbook. |
| .CarePages are personal Web pages that help family and friends communicate when someone is receiving care. It's free, private and easy to use! Learn More About Carepages |
| AVA'S FAVORITES |
Martina McBride
"She's A Butterfly"
"She's A Butterfly"
www.EverlastingButterfly.com
www.EverlastingButterfly.com
READ MORE ABOUT TEAM
AVA's WINGS AT THE EB
BILLBOARD
AVA's WINGS AT THE EB
BILLBOARD
A Monsta Midget Design
If you only remember one thing from this site, then please remember Epidermolysis
Bullosa. Awareness is the key to Support, which is the key to finding a CURE.
Bullosa. Awareness is the key to Support, which is the key to finding a CURE.