Crowd Surfing for a Cause

Dani StoneBy Dani Stone, KWB Blogger of the Month for April

What would you do if a pediatric neurologist told you that your daughter had a rare, life-threatening brain disorder that few physicians were aware of and only a handful of surgeons in the world could treat? That’s the news my husband and I received in 2006, one month following our daughter Katie’s first birthday. What did we do? Went into denial, asked questions, freaked out, asked more questions, more denial, then put on our game faces, and the adventure began.

Katie in the hospital

Katie undergoes treatment for VOGM in New York.

 

For those of you familiar with my family and our story, be patient while I give a little background info. And then, stay tuned for a heartwarming awareness update that fits perfectly into this month’s Kansas Women Bloggers theme: Making the world a better place to be and to blog.

Katie was diagnosed with a brain disorder called Vein of Galen Malformation. VOGM babies lack capillaries to slow the blood flow in their brains, which overloads tiny arteries and taxes their hearts. Left untreated, this ultimately leads to cardiac failure and death. There is no genetic, drug or environmental link; no cause is known at this time. It just happens. I like to say it’s a cruel bastard that doesn’t play nice with others and sneaks up on unsuspecting parents so fast they usually have no time to act. We had time, we just didn’t know how much.

From 2006 to 2008 we traveled from Kansas to New York on four separate occasions to receive treatment from a world-renowned physician, Dr. Alejandro Berenstein, who has devoted his life to this disorder. Dr. Berenstein even patented a medical Krazy Glue to successfully treat more babies in this decade than ever before. On May 14, 2008, Katie was deemed cured.

Dr. Berenstein and Katie

Katie with Dr. Berenstein in his office.

 

After all these years, not a day goes by that I don’t think about other parents who feel helpless and alone. Even back then, I knew something had to be done to raise awareness, but I felt like my hands were tied.

On our second visit to New York, in 2007, Katie had just returned to the ICU from surgery. After a fitful early arousal from anesthesia, she was thrashing around so much she nearly pulled out her IV tubes. Once she was finally sedated again so her little body could rest, my husband left the room for his dinner shift. Sitting beside my daughter, watching the vital sign display like a hawk, I kept asking, “Why don’t more people know about this? Early intervention will save these babies.”

On the chair beside me was a People magazine, the one where Britney Spears lost her damn mind and shaved her head, then wailed on somebody with an umbrella. You know the one. I remember thinking, “What my daughter just experienced is a headline. She has Krazy Glue in her brain to keep her alive, for God’s sake. Spoiled pop stars who lose their cool and lash out for attention should be the small story in the sidebar.”

This was before blogging became a popularity contest, before Facebook, Twitter and Tumblr. When we returned back home to Kansas, I wrote to every magazine I could think of trying to get someone to pick up the story, including O, the Oprah magazine, Good Housekeeping, etc. I was deflated when letter after letter returned with the reply, “We wish your family good luck but this story is not suited for us at this time.” Damn!

God bless our local newspaper; it was the only publication that responded to my plea. Reporter Karen Shideler from The Wichita Eagle interviewed us and told Katie’s story so eloquently. She even wrote a follow-up piece a few months later.

National news media didn’t get it. They didn’t care. It wasn’t sexy enough. It wasn’t important enough.

Then, the Interwebs suddenly shifted from a place to get news and porn to a place where people could communicate, share and connect, and not only for one-night stands on Match.com. Finally, we had Twitter, Facebook, WordPress, Blogger, unlimited online arenas.

Slowly, parents connected on VOGM support sites and Facebook groups. In 2011, I even created my own organization, the VOGM Parents Alliance, and paired it with a Facebook page to raise awareness and put parents in touch with each other. We share a bond. Family and friends try to be helpful but they don’t get it like other VOGM parents do. There is strength, knowledge, power and comfort in numbers.

Katie in the flowers

Although we are out of the trenches, many other families are in the thick of it, fighting every day for their babies to have the same chance as our little girl.

 

Now, here comes the good stuff. The tide is shifting. I feel it. On Feb. 28, 2013, after seeing a Twitter message from ABC News health reporter Sydney Lupkin regarding a “rare disease day” segment, my friend, Brandi, a fellow mama and champion for the greater good, sent a tweet to Ms. Lupkin urging her to contact me about VOGM. She did.

I shared our story and explained that although we were out of the trenches, many other families were in the thick of it, fighting every day for their babies.

I reached out to Facebook groups and told families that Sydney wanted to interview them for a possible story. She was inundated with replies.

On April 3, 2013, ABCNews.com reported a story about Haylie Howe, a 6-year-old girl who had just undergone her 17th embolization treatment by Dr. Berenstein. Her family finally got to hear the glorious words, “She is cured.”

The article was well-researched and hopeful. I shared it on my personal social media channels and encouraged others to do the same.

The next day, I received a private message from a woman who had seen the story and was worried because her nephew seemed to be experiencing similar symptoms that Haylie and Katie presented with, including a larger-than-average head circumference, milestone delays and deep facial veins. I strongly encouraged her to share the article and my contact information with the baby’s parents.

Awareness is slowly on the horizon.

For years I’ve blogged about VOGM, joined discussions, “liked” Facebook statuses, cried and comforted parents, and made my children wait to open presents on Christmas morning so I could return the email of a frantic couple who just received the diagnosis. And I’ve tried to find ways just to keep paying it forward.

For years, VOGM parents have frantically raised their hands, jumped up and down and shouted to a world that feels like a deafening crowd at a concert. Finally, we’re starting to crowd surf toward center stage, turning heads as we go.

Bloggers are doing more than posting cute cat, kid and food pics. We’re making a difference.

 

 

4 thoughts on “Crowd Surfing for a Cause

    • Dani M. Stone says:

      Hi Nancy,
      Thank you for your kind words.
      We spent many years worried that something could happen between procedures but this May we celebrate her 5th anniversary of being cured. Each year brings more relief.

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