Thursday, March 24, 2011

Cooperate, Coordinate, Collaborate, and Learn

March 24, 2011

Odd Friday Lanyard Workshop is with the Phi Theta Kappa Honor Society at Blinn College tomorrow at noon!

The semester piled back on me as soon as I got back from DC.  It has me by a choke hold and will not let up for several more weeks, even if I say uncle.

Which makes my trip to DC last week even sweeter.

Believe it or not, we got all 46 attendees and three organizers of the PAC2 workshop into one (not so perfect) photo.  This group represents the diversity and huge hearts that make up the childhood cancer community who met to figure out ways that we could help each other out.  You will be hearing more about this from me (I guarantee).

Not everyone I have ever wanted to meet from the neuroblastoma cyber world was there, but folks, you have to believe me when I tell you how meaningful it was for me to be sitting along the NB Stretch of the Table with Meg Lawless Crossett (Rachel), Caryn Franca (Nick), me (Erin), Mickey Johnson (Cody), Gavin Lindberg (Evan), Jay Scott (Alex), and of course, Andy Mikulak (Max).  

The potential to do even greater things than we are all doing individually is at hand.  We discussed ways to tap into meta-messaging, especially during September's Childhood Cancer Awareness Month and attempted to identify other ways that we might weave our organizations together through sharing data on childhood cancer, creating a collective events calendar, and building templates to learn from each other.  

For all my Erin's Dream Lanyard volunteers, as a symbolic gesture or our willingness to find ways to support mutualism and collaboration, I donated a lanyard to each of the participants, and let me tell you, they were universally admired!  I can't give you enough compliments on how beautiful and meaningful everyone found them.

I wanted to tell you about this workshop and about my thrill at meeting so many people I have only known through the internet before I told you about another, darker thing.

About two months ago I got a call alerting me that Erin's photos and bio had been lifted from this website and that someone had created a new person called Erin Jaxyn Nalley, who was in fact my Erin and your Erin.  Two Fridays ago, a Louisville, Kentucky detective squad arrested a woman named Crystal Vanarsdale on eight counts of identity theft.

This is how she looked when she was perpetrating the crime.  

This photo comes from her fundraising website for Kosair's Children's Hospital, where she claimed to be a childhood cancer survivor:   

"I was diagnosed with Acute lymphoblastic leukemia just 6 days after my fourth birthday. Since then I have endured seven very long years of Chemotherapy, four different clinical trials, 126 days of radiation, two bone marrow transplants and a stem cell transplant, over 300 blood transfustions, have swallowed more than 30,000 pills, had 17 surgeries, and have spent 958 days in the hospital." 

Having survived such a horrific experience supposedly made her a true hero to many children who now were fighting their own cancer battle.  This young woman then stole the identities of at least eight children (including Erin) with a range of ages, diagnoses, and prognoses, set up facebook accounts for them and posed as each one, luring followers into their stories.  She killed off Erin on November 30 last fall and buried her in Tiffin, Ohio.

This is what she looked like in her mug shot.  Not nearly so carefree and happy.


Now you may understand why my posts have spread so far apart lately and why my words haven't reached their full wit and sparkle potential either.  It has been very difficult to make sense of this sad and sick situation.  On the one hand, I am appalled someone would claim the rigors of treatment our children experience just for fun or glory or status or as a game.  I hate that someone captured Erin's life and claimed it as their own.  I resent the plagiarism of my own descriptions and stories.

In some ways, we set ourselves up for such a situation.  Everything that was stolen is in the public domain: all the photos, all the stories, all the biographical detail.  

And frankly, I wouldn't have it any other way.  How else would I know the lovely, talented, beautiful friends I have made from around the world if I hadn't been willing to trust the internet with Erin's story?  I have become connected with so many people and learned so much from them (I'm talking directly to you right now!), that I am willing to make that trade.  I am also willing to accept that a young woman, sad in so many ways, needed Erin as an avatar.  She's who I would choose if I needed to create someone to inspire others.

And so, in the end, each of us with blogs and caringbridge sites has to face whether it is worth exposing ourselves and our children to the Crystal Vanarsdales of the world.   I, for one, am glad that the folks I met last week shared their children with me through the internet, even though I didn't know them.  I am completely richer for the experience.

P.S.  If you are Facebook friends with Crystal Vanarsdale or her alter ego Kylie Celeste Krause, I would be very careful!


  1. wow... that is just so unbelievable... I am glad to be back on your blog and am so happy we connected!!!!!

  2. i have mixed emotions. on one hand i'm mad. she could have brought attention to herself by getting involved with Erin's Lanyards, or Alex's Lemonade Stand. On the other hand, she probably does have something going on for her that needs love and treatment that caused her to do this. I hope she gets the love and treatment she needs.

    The other thing that I noticed, and I'm sure you did too, was isn't it ironic that "Erin" was buried in Tiffin? Heck, maybe even near Christi T? The Thomas's know, right? I mean, Tiffin sounds tiny so it seems plausible that Christi and Family were impacted by all this.

    Glad you are back, glad that everything went wonderfully in DC. Now just to get through the semester, eh?


    1. This is the first I've learned of this as Christi's site has now been used by another woman for years we have learned. So sad! Tiffin is very small, about 19,000 - certainly I would have known. God bless sweet Erin! She is missed! Angela

  3. Vicki: I am so glad you have told Erin's story (and continue to tell the story of Erin's family and friends, living each day as an action verb in her honor. I found Erin's site (no clue how -- too long ago) while following a little boy named Ben Towne with neuroblastoma. At the time, I was seeking hope (Erin was doing well) and Erin (through you) gave me that -- and so much more!

    It is distressing that your generosity and openhearted approach to all of this has brought additional stress and pain. I just wanted you to know -- all that you have done, and are doing, is SO appreciated by Erin's legions of fans.


  4. I honestly dont even know what to say to this. Its insulting to so many people I know (including myself) its infuriating. Of all the things I have learned since getting involved in the NB community this is really one of the most appalling. IS there anyone I can write to get her in more trouble?! I cant imagine how this must have made your family feel.

  5. Twisted..that is my word to describe the person in the mug shot. I am glad you have shared Erin with us. Although I have never met you nor had the honor of meeting Erin, your stories have had a profound impact on my life. I appreciate my children more..if that is possible. Debi from Pittsburgh

  6. That makes me SO mad, but this young woman definitely needs our prayers. She also needs to be held fully accountable for her actions, of course. Just so you know, Erin (& your whole family) have definitely impacted my life in wonderful ways. Her courage, tenacity, sparkle and vitality have inspired me and made me determined to live life to the fullest. Thanks for opening your lives to the rest of us. We can't always do anything about the sick people in this world, but we CAN make the Erins of this world proud. God bless you and yours, Vickie.
    Jenny (the "giraffe lady)

  7. This is appalling - I'm so sorry that you guys have had to deal with this infringement of Erin's memory. Again, I can but echo the comments of others that I am delighted that you introduced us to your Erin and her story - it means so much to so many, and certainly to the majority versus the sick minority who wish to exploit tragic stories for kicks.


  8. Hi Vicki,
    I am so sorry for your loss. Erin is beautiful and yes, full of life. The video made me cry, laugh, smile.

    My sons are 2 of the victims included in this case. Crystal used both the identity of my son lost to cancer in 2002, but also his older brother. I saw one of the profile pages on Facebook and I know it would be upsetting to see the wall content.

    I agree completely that we set ourselves up for this with a public website; I too would have it no other way. A year after Danny died, his brother Stephen created our website. It has been a source of solace, healing and joy, complete with “The Journey.” That journey demanded an accelerated maturing of our kids. And that spawned some careening humor as two boys headed into their preteens. So hopefully you will smile at Stephen’s response today, and know a little bit about one of the other kids: “Danny would be proud to be part of a scam from beyond the grave.”

    On the upside, I am hoping to become more active in advocacy and you look like a woman to watch!

    Much love to you and your family.
    Mother of Danny (1987-2002)

  9. Hi, Vickie - I think it's time to publicly become your friend. Erin came into my life by a pretty circuitous route, but I'm very glad to have come to know her and your family. Her short life has had a profound effect on my long one.

    But even though Erin's story and pictures (and those of the other children) are part of the public domain, that cannot excuse the misuse of them or the distortion of the real story by anyone for any reason. If the current laws don't recognize that, new laws need to be written.

    love from your New Mexican friend,

  10. That is so sick and just sad. :( That somebody would do something like that!

    I for one have been inspired by Erin's story. I came across it completely by chance but I'm so glad I did... I spent one night a while back reading through the old archives and they made me both smile and cry. :)

  11. I have researched everything I could find about this horrible crime. It saddens me that a young lady wrongly used photos of children with cancer, but something good came out of it at the least; she brought awarenss to lives of those whom were never aware before. She should be punished for her actions and find the right ways to bring awareness to childhood cancer. Maybe she was doing it for her own selfish gain and maybe it was innocent minded geared towards the victims to bring awareness to them. Either way, new laws need to be made.