We wanted to do something special and we could not think of a better time and place to do it. At our Fabry family camp at Victory Junction we try to set aside some of the daily burden of our disease to have fun and enjoy camaraderie and mutual support with others like us. And we do just that at this amazing place! But this year we also took some time to reflect and to pay tribute.
On September 15th, 2012 at 5:00 o’clock in the afternoon we gathered at the Victory Junction Camp amphitheater to celebrate the courageous lives of those who have passed away from Fabry disease. The multi-tiered, semi-circular, grassy seating in the amphitheater provided the perfect setting for our more than 200 attendees to have a few solemn moments together.
As people entered the event we passed out helium-filled Mylar balloons of various colors tethered to small, sand-filled, similarly-colored paper bags. Written on the paper bags were the names of 172 people who have passed away from our disease. The names of our 172 honorees are listed below. The event honored all those who have passed away from Fabry disease but the bags were annotated with names we collected from our community for the ceremony. Many attendees held the balloon that honored one or more of their family members or friends while other attendees held balloons as representatives for families who were not present.
When everyone was seated with their balloons we began the ceremony. First, Jerry Walter welcomed everyone and spoke about the strength, courage, and contribution of those who have passed away. “Often, people don’t realize how strong they have been in their lives because they don’t realize everyone else around them doesn’t feel the same way they do. They don’t know how normal feels.” Next, Jerry and Angela Walter alternated reading aloud the names of each of our 172 honorees. As each name was read a family member or representative brought their balloons forward and placed them in the spacious, grassy area in the front of the seating area.
Soon the many balloons began to take the shape of seven beautiful, multi-colored balloon bouquets and a yellow balloon bouquet centerpiece. The balloons were round and star shaped. As each balloon was delivered to the front, the attendees were each given a small box to take back to their seats. When all the names were read aloud Jerry led the group in a moment of silence to honor and remember those who have passed away. Smiles and tears emerged as we thought about our loved ones and friends.
Angela Walter then spoke about hope for the future. She spoke about what we have to be thankful for and about a brighter future for families with Fabry disease. She explained about the small boxes given to attendees when they delivered their balloons. Each box contained a Monarch butterfly. Angela spoke about the symbolism of the butterfly release that was about to happen and read a beautiful poem. The poem Angela read is provided below.
To conclude our remembrance event Jerry and Angela led the butterfly release. More than 100 butterflies were released by our families in two waves. The first wave of the butterfly release honored those who have passed away from Fabry disease. The second wave of butterflies was released as a symbol of hope for the future. We all watched as the butterflies emerged slowly, gracefully and beautifully from their temporary homes. As they were released some flew off right away looking for a new home in the inviting new surroundings of the camp while other butterflies spent some time with their liberators and with other attendees of the remembrance event.
It felt good to remember our family members and friends in this special way! We continue to keep them in our thoughts and prayers!
Chuck Kleinschmidt, Ken Walter, Mary Wilson, Leo Stone, Sharon Navarre, Bobby Toby, Dan Flora, Jack Cooper, Jackie Rivers, Danny Ernspiker, Earl Wilkins, Chester "Gunner" Wilkins, Craigg Cordell, Lon Walker, Frank Bohn, Rose Bohn, Jerry Neal, Douglas Lizon, John Strauss, Michael Campbell, Steven Nelson, Robert Nelson, Ron Hill, Steve Hill, Betty Hill, Chuck Monday, Edith Monday, Grace Monday, Roy Monday, Cecil Osborn, Oralia Sierra, John Paladino, Franklin Wallace, John Norsworthy, Richard Norsworthy, Wesley "Jake" Sheppard, Sally Beardsworth, Clanard Bordelon Jr., Ernestina Aguirre, Dennis Milligan, Eudelle Milligan, Alton Milligan, Alan Larese, Pauly Bruskin, Arnold Levy, Arthur Flubacher, Philip Beutelman, Rae Glaze, Ralph Farrens, Ralph Lange, Ray Beiber, Rhoda Gash, Richard Bealand, Richard Bruner, Richard Hay, Dakota Heimsoth, Ricky Mott, David Cruickshank, Robert Gabriel, Robert Hand, Ateo Gulino, Barbara Stevens, Brian Ford, Brian Huff, Bruce Malanga, Bryan Easley, Butch Gabriel, Butch Griffin, Carol Turner, Charley Jansen, Chaz Leibowitz, Clarence Gash, Claude Loden, Cliff Bastin, Clint Desonia, Conchita Feliu, Dan Bishop, Dave Keith, David Bogan, Dean Joplin, Dennis Sakuma, Donald Lapour, Donna Halley, Dorthy Calkin, Doug Loden, Edith Bernhardt, Edna Krasnow, Ellis Linnenbringer, Ernesto Lluesma, Ester Swartz, Everett Gash, Frank Daidone, Frank Finn, Frank Marth, Fred Gash, Gail Noonan, Gary Malanga, Geoff May, George Deatherage, George Lauer, George Whitenack, Gladys Jansen, Grace Betts, Greg Wyatt, Henry Saletnik, Henry Zawada, Isaac Gray, Jack Helland, James Powhatan, Jane Killion, Jeffery Marini, Jerome Mann, Jessica Foggio, Jim Sierman, Joe Snider, Joey Rice Jr, John Beklaris, John Woods Jr, Johnnie Smith, Josephine Henning, Kathryn Mullins, Kenneth Evans, Kenny Bellamy, Ken Schmidt, Larry Teske, Leland Stewart, Leo Levitt, Leta Montgomery, Lewis Betts, Lisa Stone, Lynn Boudreau, Marjorie Smith, Mary Lally, Mary Larese, Michalena Saletnik, Milton Browne, Mitch Inge, Morris Murek, Owen Engen, Pat Hoffman, Paul Beiber, Paul Levy, Robert Jansen, Robert Montgomery, Rolland Duke II, Ron Callahan, Roy Jarrett, Rusty Mullins, Ruth Olson, Samuel Hockeiser, Shirley Gash, Shirley Brackman, Sophy Halper, Steve Mitchell, Sushila Patel, Terry Henning, Thomas Jackson III, Thomas Mott, Thomas Olson, Vito Cantania, Wanda Shaw, Warren Halley, Warren Nichols, Corine Smith, Wendel Snyder, Clifford Heussler, Willa Thurber, Richard Warsoff, William Bowley, William Butler, Paul Walker
The poem Angela read
A butterfly lights beside us like a sunbeam; And for a brief moment its glory and beauty belong to our world, but then it flies on again. And though we wish it could have stayed, We feel so lucky to have seen it.
— Author unknown
We took photos at the remembrance event to enable others to participate in the spirit of the event and to provide a lasting memory for us all. Please enjoy the photos below taken by Diane Lewis of Diane Lewis photography from Raleigh, NC at www.dianelewisphotography.com.