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Have a Heart for EB
30 Jan 2011 by admin
By Lorraine Cameron
Bruce Gunn in the wheelchair, surrounded by, on left, Jennifer DePrizio, her sister Jody, her dad, and Randy Cameron
The first Ever "EB family reunion" at Walt Disney World got off to a great start this past Valentine's Day, especially due to Disney World's having such a BIG heart for EB! Walt Disney World not only donated all the park passes, but they provided us with a private character greeting with none other than the top mouse-Mickey! If that wasn't enough, WDW took a picture of each family with Mickey Mouse and gave them the 5×7 photos as gifts.
At present, we know we cannot take away the pain of the blisters from EB, or the pain of the stares of ignorant passers-by, or the medical bills. Our goal for this Valentine's Day was to provide some relief of the pain of feeling not only different, but often alone.
Here are some of the responses we have received from those who joined us this past Valentine's Day, which indicate that we may have accomplished our goal:
Mom, I don't know why, but I feel so much better about myself."
– Angel Abbott (nine years old, RDEB, FL) said after the Banquet Dinner Sunday night.
I want to live in Florida, I don't feel different there."
-Michaela Hillard (five years old, RDEB, MI)
Silvia and Lorraine wearing the T-shirts in WDW
It was a very emotionally healing weekend for us. That was our first contact with anyone else with EB. Clay and I both needed it. I can't put into words how much it meant to us and how much it helped. Friday night after the reception, several of our kids went swimming together. It was so great. Suddenly, no one was "different". Clay had a great time. I noticed that after we had been at the reception for a while, Clay took off his jacket. He rarely does that because he doesn't like people looking at his arms. I noticed that all of the older children were very polite and quiet. They have every reason to be in a bad mood and fussy. They aren't. They are all such great kids."
-Cheryl Littleton, Mom to Clay (seven years old, EBDM, OK)
Angel Abbott and Jennifer De Prizio
"I was overwhelmed by all the attention from everyone, and it really touched my heart. I know I give hope to parents with children with EB for the future. There is hope for the future as long as parents don't overprotect their child completely, and let him or her do what they think they are capable of doing… I met a lot of new friends. A year ago, I was facing cancer surgery, and a year later I went to Disney World, and found the reason I've been looking for in my life in living with EB-why I am still here. I found a big piece of the puzzle that means so much to me. I have very good feelings inside from this trip, and there is a lot of love with this family we have, and it's a special group in my mind"
-Bruce Gunn (33 years old, RDEB, IN)
The "Have a Heart for EB" T-shirts were a huge success, thanks to Diane Abbott for designing and distributing these T-shirts for every family member. The shirts were such a fantastic hit because they attracted so much attention and questions from passers-by. We handed out "Hope Through Research" brochures and educated lots of people during this weekend!
Diane Abbott with daughter Angel speaking at the Sunday Night's Banquet
The above article was written by Lorraine Cameron for the DebRA Currents newsletter of Spring 2000. Lorraine also wrote the following article to add to this page specifically for us!!!
The "EB Family Reunion" began on a beautiful cool Friday night at the Allstars Movie Hotel's Outdoor Pavilion. People came from all over the United States – from Montana to New Jersey, even as far as Vancouver, Canada. DebRA, who donated baseball caps for everyone, sponsored the reception. As everybody collected goodie baskets, informational brochures and their free park tickets, they enjoyed the appetizers while meeting many friendly new faces. Of all the new connections that were made that Friday night, there was one that left me speechless.
Lorraine holding daughter Tori speaking at Sunday's Night Dinner Banquet
As the night came to an end, three of us remained to clean up: myself, my husband and the Walt Disney World employee, who had served our group that night. I walked over to thank her for her hard work and extra service she had given to our group, when she began to tell me, in her broken English, about how difficult it had been for her to work for us that evening. She explained that when she saw the blisters, she was reminded of her hands and feet when she was a child. Her mother took her to Doctors in Puerto Rico, who told her she had "sensitive skin". She remembered her mother carrying her to school because walking caused too many blisters and too much pain. All her life she felt so different, yet unable to understand or even explain her condition to her husband.
On this night when she saw so many people with the same skin condition, she didn't know if she would be strong enough to finish her shift. So, on her first break, she phoned her husband and broke down to him, telling him that there is a name for her condition. After my husband and I collected out jaws from the floor and gave her as many hugs as we could, we invited her and her husband to join us all at the Banquet Dinner on Sunday night. They did.
The Group Picture
The most difficult event to pull off was the group picture taken in front of the Cinderella's Castle at 8:00am Saturday morning. An attempt to gather approximately 200 people first thing in the morning was quite a task! We needed to gather everyone that early in order to avoid the massive crowds. The hard part, in addition to the ridiculous hour, was getting everyone on the Disney buses, which ran only every 15 minutes.
The picture was a great success, and it included approximately half of those who attended – not bad!
Denise Ippolito with son Hunter and her stepdaughter, with Delicia Swarr and son Ian
We raised a total of approximately $10,000.00 for the Disney Event. The money was used for travel and lodging expenses for families who could not afford the trip. It also paid for the Banquet Dinner on Sunday along with entertainment and private buses back to the hotel. Sandi Kirin and Marybeth Sheridan also contributed money from fundraisers they organized.
In addition to the money we contributed, raised and collected, we organized donations from other organizations. DebRA sponsored the reception on Friday night. Diane Abbott put the goodie baskets together for everyone, which included T-shirts, snacks and other goodies. Target donated chocolate roses, which we handed out to those who have EB as a Valentine's Day Gift at Sunday Banquet Dinner. Last, but not least, Walt Disney World donated all the park passes and arranged for the pictures with Mickey Mouse to be taken and given to each family. We want to thank everyone who gave their heart to EB this Valentine's Day! Wonderful things happen when people get together and give from their heart… and this is just a beginning.
Making Goals and Dreams Come True
Remembering Ryan
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Follow Silvia's journey from the stillbirth of her first son, followed by a miscarriage, and the first 18 years of her son Nicky's life with Recessive Dystrophic Epidermolysis Bullosa.
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EB Info World was Created on 11/20/1997 - Copyright 2019
I'm Silvia and I am an EB mom.
I was born and grew up in Italy, but now live in Southern California (USA).
I am Mom to 3 boys, 1 in heaven, 2 on earth.
My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted.
I started this website when Nicky was just an infant because I could not find any information about EB, so anything I came across I posted for the benefit of other parents and it grew from there. I still run this website (and its FB page) because I never stopped looking for information!
For more about me, you may visit my personal blog.
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