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©2017 by Hope For Marian, Los Angeles, CA

HOPE FOR MARIAN

A MOM'S JOURNEY TO FIGHT FOR HER DAUGHTER'S LIFE...AND SOME

EVERY DAY STUFF TOO

Sandy Beach

March 15, 2019

This Saturday Marian and I are flying to Maryland to attend the Patient Focused Drug Development Meeting for Niemann-Pick Type C.

I, along with several other families, am speaking and sharing Marian's story with representatives from the FDA and the other hundred forty...

October 23, 2018

We have some exciting developments! These months have been a whirlwind. We are seeing so many incredible things and Marian teetering on the edge of so much more. Marian is three years old now. We celebrated her birthday at a little water park, and again at her school,...

April 16, 2018

On our way to Chicago for her 12 month assessment.

When I was little I was pretty sure I’d be on tv one day. My cousin Gina and I used to watch Adventures in Babysitting on the VCR and rewind the opening montage over and over again, jumping from the couch to the carpet,...

December 11, 2017

Marian is singing! This is huge. When Marian was a baby she would babble, smile and communicate, but if asked to do something "on demand" you'd get a blank stare - like it couldn't connect. Our very close family friend and speech therapist of thirty years floated the i...

November 14, 2017

This morning Marian had an ultrasound. Sounds pretty painless, right? If I were to chat with someone casually and they asked what I did today, I'd say, "Marian had an ultrasound this morning," and if asked how it went, I'd say, "fine." But, like everything, there are s...

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...

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