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A Life Changing Event...for a greater population - wolfhirschhorn.org

As a group, we need to stand up and applaud each other, thank our families, and be proud of our accomplishments. A bubble was building and it finally popped.

We all know the story now and if you don’t, just check out this link: Brick Walls. On Friday, January 13, 2012, a historical event occurred on the wolfhirschhorn.org web site which may be a catalyst for change at a much higher level. Nobody saw this coming, but there is a very clear reason why it did.

Turning back the clock to march of 2010, wolfhirschhorn.org was born: a site with a vision which was yet to be realized. After 6 months from the launch, wolfhirschhorn.org was full of great stories, but lacked the large scale user adoption that would anchor its sustainability as a place for parents and families to share WHS experiences and stories. As the site plugged along, additional families jumped aboard and realized the value of a common place for current families and new ones yet to be diagnosed. More and more stories were added and with each new story, additional hope for new families began to rise. In the end, our key objective was to provide the REAL STORY about Wolf-Hirschhorn Syndrome. By telling the population as a whole what it is that we see, and the value our kids bring to the world, new families will have hope and a clearer picture of the truth.

A year after the site launched, a nice uptick in awareness occurred, building off of the 2011 Easter picture contest. Not quite a huge success, but a great foundation of awareness for our cause. A more significant event spurned a new sense of awareness with the 2011 Halloween costume contest. A milestone in itself, we had 35 entries and nearly 8000 votes. Our families and friends generated a huge buzz around the contest, which saw 4 winners receive new iPads for families and their child’s development. At the time, this contest was a monumental success for our community and the cause. However, little did we know, we were only touching the tip of the iceberg…

As a group, we give so much every day to our children, their needs, and to the other families that have hope for their children and what they will become. None of us can provide the real answers, but we can offer examples and optimism for other parents to follow. Sometimes, it’s the hope that keeps us going day in and day out. It’s the stories and plea that each of us creates and shares on this site that initiates therapy and community in exchange for a dream of our kids to be great. Other times, the site is a place of “misery loves company”. Wolfhirschhorn.org is the foundation of “Real” for anything we need it to be. We do not discriminate on the emotions of the community, nor do we censor our true feelings of joy or frustration. On January 11th, 2012, wolfhirschhorn.org was the site of pain and fear. On that day, the game changed for all of us with children with Wolf-Hirschhorn Syndrome.

Chrissy Rivera, mother of Mia, is a key story contributor and supporter of wolfhirschhorn.org. Chrissy was one of the first families that we spoke to early on in our diagnosis of Kendall. A few heartfelt conversations took place between our family and hers back in the early days. I follow many families and know the challenges that the Riveras face are more extreme than most. The ups and downs that this family has faced cannot be measured or understood. Thankfully, a safe landing place for Chrissy to communicate has always ended up being on wolfhirschhorn.org. However, her article from January 12th, 2012 didn’t just give her an outlet; it changed the landscape and awareness for kids with Wolf-Hirschhorn Syndrome and all disabled children facing the prospects of needing an organ transplant.

The news break started on Friday the 13th at around 11am Central time. A normal January day, with a normal workload to attend to; at least that was the plan. My email inbox starts filling up with comments for moderation. As the site administrator, all comments need to be reviewed and approved/unapproved before becoming public. All of these comments are coming by way of Chrissy’s latest post “Brick Walls“. Not knowing what was transpiring, I quickly checked the site traffic and saw that it was growing quite rapidly. Something happened that triggered a run to the story. I reached out to a few of the “in the know” wolfhirschhorn.org chief advocates looking for the answer; nothing. Nobody had an answer as to why this article was getting so much attention. As the day continued, I watched the traffic skyrocket and the flood of comments pour in. By the end of the day, over 62,000 people hit the web site. The site was seeing so much traffic, that I was starting to get complaints from visitors about the site being down. The peak of the traffic on this day saw over 8,500 visitors between the hours of 8:00-9:00pm! Wow. I was in complete awe to see that one of our articles became so popular. We were in the middle of a story going viral.

As the next few days passed and an additional 250,000 people flocked to the article, the press and public interest continued to take notice. The political and religious connections to the article caused an uproar as public opinion chimed in on the debate. While word of the story spread, the CHOP Facebook page continued to get hammered by supporters of Mia and the Rivera family. Every major news station picked up the story, looking for commentary from Chrissy and her family. Between Chrissy and me, we received more than 40 inquiries from media, bloggers and news stations asking to talk to Chrissy. The following week after the story went viral, over 525 (and counting) links to this story hit the web.

The power of social media continues to thrive. The experience of this story going viral is a unique event that we are likely to be a part of only once in a lifetime. As the story continues to buzz, it is quickly moving into a political and public forum. Senator Sweeney from New Jersey has already pushed forward action on transplant rights for the disabled, and CHOP has made contact with the state to address this matter. The wheels are in motion for change at a larger scale.

The outcome of Chrissy posting her article will likely end up with the best possible solution for Mia. Mia will get the best treatment available, whether it is at CHOP or another hospital. In addition to Mia receiving the best of care, rights for the disabled will continue to gain steam and recognition. Discrimination against our kids needs to be addressed and maybe this is just what we needed to see happen.

The success of this event can’t go forward without recognizing our community as a whole. Because of all the contributors, parents, wolfhirschhorn.org followers and advocates of our kids, this wave would never have happened. Thanks to all of you for being a part of a building trend to give our kids the stage they deserve.

And finally, check out some of the vitals of the story…they are quite amazing:

  • Average site traffic per day, 3 weeks before the article went viral: 165 visits/day
  • Total site traffic since the article was posted 2 weeks ago: 387,000 visits
  • Largest source of referrals on the day the story went viral: 91% from Facebook, 2% from Change.org

Like us on Facebook to keep up with Wolf-Hirschhorn Awareness.

8 Responses to A Life Changing Event…for a greater population

  1. Kathi says:

    That’s amazing Kevin! I hope you are able to keep up with this wave of recognition! I am so happy that we as a family helped make this event go viral for Mia! The fact that she and her family even had to go through something like this in this day and age is still shocking to me.
    I think you are right, I think this is just the beginning of something great!
    Thank you for giving us a place to share!
    Kathi

  2. LeeAnn says:

    You’re right I think about being a once-in-a-lifetime kind of event! I’m very proud to have our group represented by the Riveras and by Kevin. You’re each doing a top-notch job being the faces and voices for Wolf-Hirschhorn!

  3. taylorbug says:

    This is just awesome!! Even though I am sorry that Mia and her family had to go through such a hard time, I look at Mia as being our HERO! Our kids could have faced the same issues as Mia but hopefully now they wont ever have to. Thank you to Mia’s family for sharing her with us and I will continue to pray for her and all of our WHS kids. Thank you Kevin for making it possible for all of us to connect.

  4. Heather says:

    Thank you to Kevin and Chrissy for being such well-spoken voices to the public about our kids and the dignity of their lives. Your time and efforts are very much appreciated by us all.

  5. Leonie says:

    Wow thats incdreible!

  6. Phil Dzialo says:

    I am very happy that this valuable cause has moved forward through the efforts of FB and many bloggers along with myself. People who see truth and value in the dignity of all life are a formidable and powerful force of change in he disability community I am so joyful…
    The only aspect of unfortunate consequence is that it brought out a handful of people who believe that some lives are less worthy of living than others. This evil which results from a utilitarian ideology must be directly addressed as I did rather forcefully in my latest blog post. My son is totally disabled in every aspect and was considered a :non-person human. Underlying all discrimination is the skewed belief that there is a hierarchy of value in human life and rights. This is my present cause…to challenge those beliefs forcefully.
    Again, your efforts initiated great change … I applaud your effort and achievement.

  7. Brenda Gill says:

    I hope this story goes forward with steps being taken to protect these innocent ones who need protection. Sarah Palin was right when she talked about death panels and this story proves it. When we have a President of the best country in the world in support of abortion can anyone doubt that he would support no medical care for people like Mia and older people? I will put Mia and her family on my prayer list and ask for prayer for her and her family at my Church. Also I will pray for this organization that they are successful in their endeavors. God Bless.
    Brenda Gill

  8. ann says:

    Let me start off by saying I can’t belive the Dr has the nerve to talk to A family like he did just because your daughter has some disabilities doesn’t mean she shouldnt have A chance at life. What if that was his kid would he be saying the same thing no he wouldn’t he would be doing like you guys trying to fight for your daughters life. Keep on trying don’t listen to that Dr if ya have to go to another hospital then do so keep fighting someone somewhere I am sure will give her A kidney she deserves since ya guys are.wilingly to try to donate I don’t know why he wouldn’t do it like I kinda know what ya go through my son has to have A kidney transplantt to he is 4 years old and has been on medications his whole life but he wasn’t denied for.his transplantt he is on the list but on hold for now its hard but he goes to geisinger in danville pa there Wonderfull with him they take good care of him there they have every Dr I could think of there there A Wonderfull hospital…. Good luck for your daughter and the family I hope and pray she will get the transplantt she needs cause every child deserves to live….

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