Dani Stone

I Hear Laugh Tracks

Category Archives: VOGM

Vein Of Galen Malformation – My daughter fought the battle and won! This is where I talk about it. Writing is therapy.


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Video – Listen To Your Mother 2013

Remember in May when I yammered on and on about being chosen for the Kansas City cast of Listen To Your Mother? Then I yammered on about how great the show was? Well, for those of you who couldn’t attend, the videos are up!! Yay. *flop sweat* So now you can see what all the excitement and yammering was about.

My video is below. I did manage to look at my Dougie at the end, and I held back the ugly-faced cry as long as I could.

Sincere thanks to –

Producers Erin Margolin and Laura Seymour for allowing me the chance to tell Katie’s story.

My Dougie for being my rock, and also the OCD yin to my flighty yang.

Buck Sommerkamp for shooting a video that only highlighted one of my chins.

Lisa, Sarah, Greta, Molly, Michelle, Jen, Julie, Rita, Sarah, Ashley and Leslie for being the instant sisterhood I needed to get on the stage, open  my mouth and make the words come out. You are – Once in my life, forever in my heart. If I got tattoos I would totally tattoo that but instead, just imagine the phrase winding around my ankle or scrawled across my chest.

To see videos of the other beautiful strong women I shared the stage with that night, Click HERE, then scroll down till you see “Listen To Your Mother – Kansas City 2013” (next to the last row). Grab some popcorn and more than one tissue.


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4th Anniversary of a Miracle

  Today marks the 4th anniversary of hope, the continued promise of a future and the celebration of a miracle.

Four years ago today my husband and I huddled together in a New York hospital room waiting to hear the prognosis of our baby girl who was in surgery. Under the watchful eye and skilled hands of Dr. Alejandro Berenstein, she was bravely undergoing her 4th angiogram to determine if a 4th embolization procedure would be needed to repair the rare disorder that had so cruelly taken up residence in her brain, Vein of Galen Malformation (VOGM).

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VOGM Parents Alliance

 In 2005, my little family started a journey. It began when a pediatric neurologist gave us a devastating and confusing diagnosis, “your daughter has vein of Galen malformation.” For those of you who follow this kooky little blog, this is not news to you. I talk about it a lot. It consumed my life, my energy, my heart and every waking moment from October 2005 to May 2008. It’s a diagnosis so rare, many neurologists will never see a patient with it in their practice.

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VOGM – 2 Year Anniversary

May 2008 – Goodbye New York! Thank you is not enough!

When you look out the window on the 14th floor of Roosevelt Hospital in New York City, you’ll see yellow taxi cabs, pedestrians crossing against the light, Starbucks coffee signs and the GE building looming against the sky. You’ll see these things but you won’t think about them.   The room service tray might be there but you’ll only be able to pick at the eggs, and it will be hard to swallow the iced tea over the lump in  your throat.

You won’t think about anything except when the phone is going to ring. The phone call that always comes, hours after you’ve kissed your daughter goodbye and left her sleeping in the arms of the anesthesiologist.  The phone call that comes from the operating room, telling you how many arteries they’ve closed off in the brain this time. Hoping you won’t hear the doctor say there’s been a complication. At least that’s the way it’s always been for us, particularly on May 14, 2008.

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