Miraculous Connections Paients Use lnternet to Find Help for Children with Rare Disorder
Clifton, VA- “Reaching Out’, the WAGR/Aniridia Network, announces the first annual WAGR Weekend on June 23-25, 2000 in the Northam Virginia suburbs of Washington, DC. The Reaching Out Network is a support and advocacy group composed of parents and professionals of children with a genetic disorder called WAGR Syndrome.
WAGR Syndrome is extremely rare, with fewer than 50 cases reported in medical literature. WAGR is an acronym for Wilms’ Tumor (cancer of the kidney), Aniridia (lack of iris in eyes), Genito-urinary problems, and Mental Retardation.
Children with WAGR Syndrome face enormous obstacles, with far more disorders than identified in the acronym. Surviving multiple surgeries, cancer and chemotherapy before the age of three is only a beginning.
There are many facts to children with WAGR. They are highly complicated children; some with over 40 identified diagnoses and disabilities. Each child with WAGR Syndrome has many capabilities as well, causing an extraordinarily complex need for collaborative medical and educational care.
Individually, parents of children with WAGR Syndrome have had to become experts in medicine, behaviorism and education. They have done this in a vacuum with little information or support to help them cope with the many complications of this syndrome. Many of their questions have had to go unanswered. Until now.
With the global reach of the Internet, these families have begun to find one another. An email discussion group began and as a result, seven families from Canada and the United States will be coming together in Northern Virginia for this historic event.
One current example of how critical the association of WAGR families can be is this: through communication on the Internet, they have identified that kidney failure is occurring in their teenagers with WAGR Syndrome. Until learning of this risk through The Reaching Out Network, some parents did not even know their children were experiencing the early stages of chronic kidney disease.
These families have accomplished what medical science could not. They discovered one another and their remarkable similarities. Never before have two children with WAGR Syndrome met. .. it is the rare geneticist who has seen two in a lifetime.
WAGR Syndrome has dominated the life of these families. Now they will come together in June for the Summer2000 first time. There is palpable excitement about their hope to find further insight and knowledge about WAGR Syndrome and a keen desire to connect personally. For then, solutions can be found to better serve these wonderful children who have such an engaging mix of ability and disability.
The incredible story of The Reaching Out Network is an inspiring example of how the Internet can allow people for all over the world make such miraculous connections.
WAGR Weekend Recap By Kelly Trout
Well, the 1st Annual WAGR Weekend is Officially Over. Sort of …
To everyone who attended – thank- you for coming. “There aren’t words … ” is putting it mildly,
To those who couldn’t attend-well, the bad news is, you missed the event of the Millennium. The good news is–the Second Annual WAGR Weekend is already in the works! And believe me, ”The Works” is what it promises to be.
With the press coverage, (and corporate attention) the first Weekend has already generated, next year’s event will be incredible – on an even grander scale.
And judging from the comments of the families, we are all committed to not only returning next year-but also to finding ways to help every other family in our group get there as well. Watch for lots of discussion on this one…
- A Recap of the First Annual WAGR Weekend*
Friday, June 23, 2000. 7pm – The Meet and Greet
As each family arrived, everyone who came in the door produced a sense of excitement, and the feeling that we were each finally meeting long-lost relatives. … We were a noisy, laughing, talking, hugging group (the hotel was very understanding. Thank you Country Inns and Suites, thank you Brian!)
We all agreed that seeing each other’s kids was incredible … and the chance to observe them all together led everyone to begin to remark about their similarities, (which continued for the next 2 days … )
We finally tore ourselves away from each other rather late, (which allowed the families who arrived late to actually check in and unpack their cars and go eat dinner … ) We’d officially begun!
Saturday, June 24, 2000. 3:30pm The Barbecue
When Kim and I got to Debbie’s, (with 2 carloads of kids and food) Debbie’s house–and yard- looked fantastic. She and Damon had thought of everything! (including the neon signs directing people to the bathroom … canopies over the tables in the backyard so there was plenty of shade on this hot and beautiful day)
The volunteers, (included many of Debbie’s neighbors, friends and relatives!) began to arrive…Cesar, Evelyn and their family had already arrived at Debbie’s. They were hard at work, cooking. (Cooking–after having driven 15 hours from Canada to get here … after Cesar had just gotten in from Hong Kong, where he’d gone to get the prototypes for these fantastic light/sound superballs he invented, which he gave to each of the kids. We are all sure are the next big fad and we’ll all be able to say we “knew him when … ” after he’d gotten back from the Philippines … after having literally no sleep for DAYS)
Of the food they made for us, well, let’s just say that we all made pigs of ourselves. We ate the platters of Shanghai meat rolls faster than they could cook them … wow. And the cookies Cesar had made, ohhhhhh …. (okay, I’ll stop now)
Kim had a plan for the Single Volunteers of D.C. group, which had offered to assist us with the kids. Her plan included delegating a one-on-one aide for each child who needed that, as well as a few to help the younger siblings have fun, (and stay safe).
Debbie’s idea to have the volunteers there -and Kim’s plan for directing them–were sheer genius. And the way it all worked out was (you’re gonna hear this word A LOT) miraculous.
Let’s see. We had Jessica, (Debbie’s niece who’s autistic) got a volunteer who works with autistic adu!ts for a living …. Zachary Rose (age 2) got a volunteer who’s a nanny … we had a volunteer who’s a sports nut, so he took the teen boy siblings out to the commons for soccer and such … a volunteer with endlessly patient ears took Caroline and Irma and spent hours
honoring them with her undivided attention … two female aides who derived great pleasure from taking the little girl siblings and playing everything from sandbox to coloring to bubbles … Sam (age 7, non-WAGR but bipolar) had the greatest day of his life, (no kidding, and no mean feat) because his volunteer turned out to be utterly perfectly matched to him … Alex Rose has an extraordinary
imagination-his aide tapped into that and participated fully in the complete little universe that Alex spontaneously dreamed up … l’ll stop there.
The volunteers were the absolute heros of the day, truly. They made it possible for us all to relax, talk, enjoy each other and just not have to worry. What a gift…
Let’s see. My mother drove up, (3 hours! Thanks, Mom!) to take pictures for us-7 WAGR kids in one place!!! (when she knows how much the reprints will cost, I’ll pass that along) Debbie’s sister Leslie walked aiound with a video camera all day-thanks Leslie!
We’re trying to put together a video which includes the newscasts:-), we’ll let you know if that works out– There was a clown who did animal balloons and face painting … the fire department and paramedics arrived, (for fun, not to respond to an emergency!), and while I don’t want to spoil the surprises that all the families will share, let’s just say there was a water slide-which many of the kids will no doubt include in their “best memory” comments-entertainment (thank you, Alex Romero!), and WAGR kids singing and WAGR kids dancing and lots of laughing and enjoying themselves and having more fun than many of us thought we would ever see. The brothers and sisters also had a wonderful time and at times, even formed their own informal support group for sibs 🙂
After the wonderful food—which Debbie’s wonderful neighbors and friends helped to cook and serve and store, (thank you!) and while the kids played, we parents got together on the deck and spent some wonderful moments laughing and crying together. It was great.
Dr. Joe Wagstaff, (who drove 2 hours to be with us–thank you Dr. Joe!) listened to our thoughts and comments and concerns … asked us all insightful questions … and answered many as well. Joe does not work with WAGR research, but we think that after his experience with us this weekend, he’ll pass the word along to his colleagues…
The photographer from the Centerville Times, (a local weekly paper) came by to take a couple of shots and get a caption. He stayed *3 1/2 hours* … His job description changed to reporter over the course of those 3 hours, and when he left, he told his boss that the story needed bigger coverage.
The evening wrapped up with a spectacular fireworks display, (thanks Damon’ Thanks Cesar!) and it was the perfect ending to a spectacular day. We were all glad that the Weekend wasn’t over yet, It was very hard to say goodbye to everyone, even for just the night. .. The hardest part was saying goodbye to the Rose family, (who weren’t able to stay for the Cruise since they both had to get back to work) Kim and her family who were also unable to go on the cruise. As wonderful as the Cruise was … there was an empty place where these families should have been …
Sunday, June 25, 2000 10am The Easter Seals Cruise for Kids
The Cruise for Kids was the brainchild of a man named Tom Wertz. Tom is with Merrill Lynch … but his REAL job is human angel stuff. He moves from one issue/charity to another—putting people who need help and people who can give help together.
Tom started the Cruise for Kids to give Easter Seals some much needed publicity, to give disabled kids and their families, (and local yacht owners) the experience of a lifetime.
The Cruise for Kids people gave our WAGR Weekend group our own boat, (aptly named, “Finished Business”) and it was a beautiful 85 foot yacht!!! (We WAGR families travel in style, don’t we?)
There were 2 TV crews on the boat, (Damon and Debbie and Danny were already on camera when we arrived!) One station did a very quick interview and hopped off before we got underway.
Jennifer Ryan and her cameraman from Channel 9 stayed with us throughout the 90 minute cruise. In fact, Jennifer Ryan had informed her station that the only way she’d work that day was if they allowed her to cover the WAGR group on the cruise!
Tom Wertz had decided to join our group for the Cruise as well. Tom spent the cruise meeting the kids and families and asking dozens of questions about the group and what sort of plans we have for the direction of our group-as well as how he can help us achieve those goals. What an offer!
The Cruise was GLORIOUS … and each of us will need to post our families personal memories of this incredible event…there’s just so much to tell. The Cruise *should* have wrapped up the Weekend … but we had a hard time parting, so we spread it out as long as we could … different families went out to dinner, toured the Capitol, went swimming together back at the motel…we just couldn’t let go of each other … Like old friends who’d just met…
The feeling that we were “all together” was tempered by the knowledge that in reality, we weren’t. There were so many families missing … so much more to share, that I think we all came away from this first Weekend feeling like while we had uncovered so much information from the families who were there, there’s still so much left to discover from the families who were not.
Our greatest hope is that next year our group will at least double in size, (triple?)
What the WAGR Weekend Meant to Me – by Kelly Trout
Why I wanted to come: Because I’d never actually seen another child with WAGR. Because I wanted Caroline to know that she’s Not the Only One. Because I couldn’t wait to talk to other parents and not have to type at the same time. Because I love food. Because I wanted to share what I’ve discovered. Because I wanted to team Because I think we’re at a point of a breakthrough in the research, because, because ….
What It Meant to Me: It meant that Caroline and I are not alone anymore. Really, truly and in the flesh, not alone anymore. At the barbecue, I told everyone that my years of raising a child with WAGR have been like being stranded on a desert island. And the Weekend felt just like being rescued from that island. After all these years .. and long after having given up any hope of rescue. We’re not alone anymore!
My Favorite Memories: (Oh boy. All of them, or just the first 50? … ) Caroline … putting on the glasses that Cesar brought. He’d invented them for Alex, (Cesar is amazing, there just aren’t words … ) Caroline put them on-and a miracle occurred. We’ve tried every visual aid know to man-and I mean that literally, she really has–and absolutely nothing worked for her, nothing made enough of a difference for her to be motivated to use it.
But these glasses-oh, oh, oh. An example: She put them on, and looked across the yard and saw a hat on the table. ACROSS THE YARD. Another: On the cruise, she looked out over the water and saw a sailboat off in the distance. “Look at thatt” she yelled, “look at that!” It was a moment I’ll never forget to the day I die …
When we got back to Kim’s house, she sat on the sofa and watched TV. On the sofa-instead of her usual position with her nose plastered to the screen … she watched ‘Who Wants to be a Millionaire” and read the answers. From the sofa!
–Caroline at Debbie’s … riding a bike for the first time in her life. Damon has a tandem bike he rides with Danny, and he got it out. Caroline got on … and was terrified. Just as she began to rethink her decision to try it, Damon started pedaling and off they went. She came back grinning from ear to ear, and had another item to check off on her; ”Things I Want to Do In My Life” list…
-Laura (6 yr. old) on the cruise … taking her tum piloting an 85 ft yacht, and taking the job very seriously indeed, (“Captain, should we check the gauges?”) then turning to me and saying, “I’m so lucky, aren’t I?”
–Me … looking around every little while throughout the Weekend, and mentally pinching myself over and over. It’s real, these people and their kids are real and they’re just like me and Caroline and they’re real and they’re wonderful and this is really happening …
Weekend Memories by Catherine Luis
Dear Friends, yes I can truly say that. With all my heart I would like to thank everyone who helped make this happen. The reality of it set in when I entered my hotel room and found the gift basket and the Packet. When I look at that folder with the logo, it hit. We were really going to do this. I ran in the bathroom and cried.
The meet and greet was really like a get together with a bunch of old friends. There are no words to describe my emotions at the BBQ. There was such a calm relaxing atmosphere. I enjoyed each family. The children accepted me and talked or included me in whatever they were doing.
I think that was the greatest feeling. I know Irma, if she is uncomfortable, she will not speak to you. Hard to believe I know, but very true. I saw the most loving brothers and sisters. Their patience and warmth with their siblings was so impressive. That moved me. Irma is an only child, and I always wondered what it would be for her to have sibs.
I was so at ease speaking with the parents openly about anything. At one point I looked around to take it all in. My thought was in every parents eyes was a look of understanding, no tension, no prejudice. We’ve all experienced our children being left out because of prejudice. Here was a place where everyone belonged.
The cruise was wonderful. It was the winding down point for me. I hadn’t slept much with all the excitement. Irma’s in awe of Caroline. She finally met her match. Through and through. In each child a saw a little of Irma. Thats something I’ve never been able to say.
!’m locking forward to cur group conversation, and next year can’t come quick enough. John’s already making plans. Thank you all for sharing and caring.
More Memories – by Dianne Penfield
What a wonderful time we all had! It was like we had known each other for a very long time, but were just meeting the “main characters” in the stories we had already come to know.
On Friday evening it was fun meeting each family and putting a face, a voice, a personality with many of the people we have had discussions with through the Internet.
Later that day, the picnic everything seemed so smooth and effortless! What an extraordinary feat undertaken by Damon & Debbie, Kim, Kelly, and the many other people who generously provided their time and talent – including the Romero family who made us all delicious Philippine cuisine. All of the food was delicious, there were so many hours and days spent in preparing the feast we all enjoyed and appreciated.
A special thanks you to all the volunteers. Because of their valuable help, the parents were able to sit down together and talk and the children had fun playing games in the field. The volunteers were very friendly and truly seemed happy to be there. It was such an enjoyable time getting to know each family a little better, discussing the issues such as kidney disease, behavior, stress, school, etc. that eac-h of us deal with.
For so many years it seemed like we were dealing with these issues alone. It is comforting to know that we are not alone, there are others who endure similar feelings, experiences, and challenges.
On Sunday, the cruise – how can I express this enjoyable experience! The yacht was incredible, the day was beautiful, and the children were excited. We were standing in the front of the yacht with the wind blowing in our faces as we traveled down the river. I have never seen Nicholas that quiet and stand so completely still for such as long time as I did when he was experiencing the wind in his face and the rocking of the yacht.
Remembering his face as he engulfed all the new sounds and sensory stimulation is a memory that I will always treasure.
Also, I was very surprised and impressed at the news coverage we received on the 11 o’clock Channel 9 news that night.
On Sunday night it was so nice spending time at the hotel pool with Cesar and Rose and our children, spending our last evening talking even more about our lives.
I am very blessed that I was able to attend our first WAGR weekend and I do plan to go back next year. A heartfelt thanks you to all the people who gave tremendously of their time and resources in order for this weekend to come together so smoothly and memorably.
Kim’s Tum – by Kim Pillow
In the beginning… this was just something that I wanted to do “For Kelly.” She has been my best friend since we were 12 and at our teacher’s prompting, decided to play a game of jacks together … some of you may be old enough to remember jacks 🙂 Anyway …. I remember vividly Kelly writing to me back in 1981 to tell me that her precious child had aniridia… and the explanation for what that was. Then the Wilms’ Tumor … and the telephone calls back and forth from the hospital… the chemo … the isolation … the fear … the isolation … the feeling of helplessness I felt that I couldn’t fix this for her.. I didn’t have any more information… any “inside track” … I just hung in there as best
I could. Then the diagnosis of mental retardation… and the isolation … then finding out that this
was a syndrome … can you believe it? I know … been there, done that, right?
But for me … for 18 years, I have watched my best friend do the research, invent the wheel, educate her daughter’s doctors, teachers, caretakers, family and all the while never have ANYONE
with whom she could share this experience in the first person. When this first began … the biggest deal for me was to know that finally, finally… I could do SOMETHING to make this easier… I could help throw a little shindig for other parents of WAGR kids so Kelly could finally meet and share and trade information …and she could remove that feeling from isolation from her life at long last. This was why I began this whole thing… why I even joined the list to begin with … for Kelly … and Caroline… who I love like I “birthed” her myself.
WAGR Weekend – by Karen Rose
Why I wanted to come to the WAGR weekend-
Because most people can’t understand that our lives are divided into BEFORE the diagnoses and AFTER the diagnoses and we are not the same people that we were before.
The day I realized this, years ago, I felt that there was this big wall up between me and everyone I had ever known in my life … and I wanted to come to meet all of you because I know about that very isolating wall. Every other challenge in my life could either be fixed or ”waited out” … this … the diagnoses .. could not be dealt with in either of these ways, and all of you, again, know what I mean. And I wanted to be in a place where I wouldn’t constantly be worrying about how Alex behaved and how other people were responding to him … a feeling I know all of you have lived with on a daily basis. I wanted to meet all of these WAGR kids who I’ve been hearing so much about and see for myself if they are all actually so similar … and they are!
Catherine said she saw a little bit of Irma in all of the kids and I know exactly what she means. Although Alex was the youngest of the group, I can see so much of him in each of the other kids, and I think in some ways, he even saw it himself.
He also was mesmerized for a while (okay, a full 60 seconds may not be a long time for most people, but for Alex to stay still and in one place for that long is a miracle!) by Alex Romero’s guitar playing and singing. Many times throughout the day I saw him watching and enjoying the other WAGR kids, and it was great to know that they just accepted him as he was and saw him as just another kid … that doesn’t happen very often (Or ever!) for Alex.
I guess I’ve merged by this time into the next part of your format Kelly … this has become more stream of consciousness. Anyway, Chuck wanted me to say that he loved meeting all of the other parents and watching them with their kids.
As far as the best thing about the weekend goes, that’s hard to say. I guess the fact that I had to chase Zachary at least 4 times to get him to leave the barbecue because he was having such a great time shooting water guns and chasing fireflies that he refused to leave … and just looking at all the WAGR kids trying to get themselves lined up for a picture, all of them standing together in one plac-e. where before there had always only been Alex … (for us)
And also seeing some of the siblings and how well-adjusted they all seemed, how great they were with their WAGR siblings and the other WAGR kids and just the fact that they were all such nice kids. One of the things Chuck and I always worry about is how having a sibling with WAGR will affect
Zachary … but I think I’ll worry about that less now.
Next year I hope that we can somehow make it possible for everyone who wants to be there get there, whether that means fundraising or whatever. I know that those people who weren’t able to come this year will definitely want to be there next year after reading all about the weekend. I agree with Kelly that we shouldn’t allow the weekend to tum into a conference, but should allow it to remain as informal as it was this year. I’m already looking forward to next year, seeing all of “original 7” again and meeting all the new faces who will come next year. I really think that we will all be invaluable to each other as the years go by and our kids grow up.