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Sandy Beach

September 28, 2017

August 26, 2017

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Recent Posts

September 28, 2017

It's been just over six months since we got the diagnosis, and almost six month since Marian started treatment. This time last year, almost exactly, I was in shock knowing Marian may and likely has a fatal genetic disorder. I was carrying her around everywhere because...

August 26, 2017

When Marian turned one I did not know if she would live to be two. That sounds like an exaggeration, it’s not. I only shared this thought with my very best friends because it was so horrible. At the time we knew Marian probably had a storage disorder, but had no idea w...

July 29, 2017

Marian is the youngest patient in the world that we know of to be receiving this treatment via IT (spinal fluid). Another title holder is our friend Parker who is only six months old and just started it but through an IV to target his liver. Spain allows compassionate...

July 18, 2017

Marian has ultra high frequency hearing loss. We sat in the little room together for the hearing test. Not to brag but I could hear all the sounds, but Marian couldn't. She sat in my lap as they played sounds from speakers on either side of her. A little on the left, a...

July 14, 2017

I sometimes would sit at night looking at charts for NPC. There's a white line for pre-neurological symptoms, a grey line for neurological symptoms and sometimes a blue line for attempted interventions. Sometimes these lines are long, usually when there's no symptoms u...

June 22, 2017

She's so small. That was my first thought when I first saw Marian, like a miniature porcelain doll.   

At Marian's early well baby visits her weight gain left something to be desired. It took her several weeks to hit 7 pounds and at Thanksgiving, when she...

June 8, 2017

Well, it happened. I cried in public. The worst. I last cried in public seven years ago and still cringe when I think of it. Albeit that time, it was at work, in open court, in a two month sex abuse trial, the judge called me over when I started crying and as I walked...

May 30, 2017

 "More More More More" is the theme of the last couple weeks for Marian, she signs more over and over and says, "moe" and then swipes her hand across her chest a few times signing please for good measure, all while maintaining intense eye contact. She is a bottomless p...

May 27, 2017

My daughter is dying. Maybe. She has a fatal and progressive genetic condition. She is one and a half years old. There is hope for her with experimental treatments helping to stall the progression, but still, it’s rough. Some of the most beautiful things I’ve seen in m...

May 24, 2017

Two of my best friends from law school traveled to Chicago with Marian and I this time. I didn't realize how much I was missing and needed time with them until we were all together. Kim, Diana and I have been a trio of friends for over ten years now. We used to all liv...

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©2017 by Hope For Marian, Los Angeles, CA

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