Putting Faces to Names: the Story of the ESBABIES Website

by

Norma Brown

[Editor's Note: Norma is the mother of Charlie, diagnosed with Ewing's sarcoma in June 2001 at the age of 22. He had just graduated college six months before. It has been 3 years and 8 months since his last treatment and he is doing well. He is currently working on tour for Jason Mraz, his best friend who wrote the hit song "The Remedy" for him when he was in treatment. Norma is a Senior Technical Writer for a national corporation.]

In 2001, the number of members of the ACOR E-SARCOMA Online Support Group seemed to be growing, and as it did, we learned more and more about the families, became close to them, sometimes even finding lifetime best friends. We frequently read and heard the names of the members and their loved-one suffering from Ewing's sarcoma (ES). The more we learned, the more we wanted to put faces to these names. The only method at the time was using our personal e-mail addresses to send pictures back and forth to each other. This did not work well for several reasons. Not everyone saw the pictures and newcomers to the group could not easily learn about others whose information had already been exchanged .

It was during one of these times of sharing pictures with other members that it dawned on me that we could post these pictures and the stories on a web site, making it available to anyone anytime. Some members I asked were enthusiast about this idea so I started the site. I sent an e-mail to the list telling them if they wanted to add their pictures and bios, just email them to me. I have been receiving them ever since.

The first site we had was a free site with angelfire.com. We started out with five or six web pages, putting all the pictures and bios in alphabetical order on those few pages. As time went on, we added other information (member email and postal addresses), a page with links to personal webpages of our "esbabies", and an additional page to provide links to ES information in general, such as the wonderful www.cureourchildren.org site.

As time went on, we outgrew the free site offered by angelfire. An overhaul on the site was needed and when it was finished, and we finally had a more organized web site and a direct URL address that was much easier to remember (www.esbabies.com). The new site was announced to the members of the support group in 2003.

In 2004, a new family joined our support group. It was Elsbeth and Loic, parents of Emma. It just so happened that Emma’s tumor was in the exact location as Charlie’s, my son, and she had the same surgery and treatment. So we were "connected" right away.  I am not a web page designer and have only a basic knowledge of how to create a web site. Loic is a web designer, and offered any help I might need. I was delighted As a result, Loic is upgrading the site once again, automating some of the tasks, and giving it some of what it has needed for a while now. Hopefully we will see the new site in the spring or summer of 2006. We will work as a team to keep the site available and updated. We both feel it is the least we can do for any family that finds it helps them.

The most difficult thing I have to do is add "In Memoriam" beside a name. The first time I had to do this I questioned whether I was doing the right thing. I questioned if there was a right way, do I need to ask the family? Were the words the right words? I can never do it immediately. But each time I do it, it is done with respect and a moment of silence.

I consider my contribution to this site extremely small when compared to what I received from the members when I needed them. My son’s diagnosis was the worst experience of my life and I was not coping very well. When I first posted to the list, I received the most wonderful responses from so many. I felt I had found my sounding board, my punching bag, and my "sisters and brothers" of ES. I could yell, cry, and once in a while laugh, and knew I was doing it with people who knew exactly what I was feeling. I have said it many times, "The support group kept me sane." I thank them.

The site is a success because the pages belong to the families. It is one way they can communicate their story, share the photographs of their child or loved one, and connect with others whose diagnosis is similar to theirs. It is an honor and a privilege to help them do that.

[Editor's Note: Click here to contact Norma directly.]

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