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A 501(c)(3) medical research charitable foundation intent on advancing a cure and patient access to treatment for
Niemann Pick C

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HOPE FOR MARIAN

The blog we kept the first year after Marian's diagnosis, and less frequently thereafter but still trying, original subtitle:

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

EVERY DAY STUFF TOO

Sandy Beach

Featured Posts

Watch Me Mama

Oct 23, 2018

Watch Me Mama

One Year Forward

Apr 16, 2018

One Year Forward

Medical Journey to NPC Diagnosis

Jun 22, 2017

Medical Journey to NPC Diagnosis

Number Four

May 24, 2017

Number Four

Witnessing a Treatment - Your Daughter

Apr 11, 2017

Witnessing a Treatment - Your Daughter

Reading The Fine Print

Apr 5, 2017

Reading The Fine Print

May The Odds Be Ever In Your Favor

Mar 27, 2017

May The Odds Be Ever In Your Favor

Let's Stay In Touch!

To 400 And Back Again

Sara McGlocklin

Jul 29, 2017
4 min

To 400 And Back Again

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...

Hearing Check

Sara McGlocklin

Jul 18, 2017
1 min

Hearing Check

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...

Life on the Line

Sara McGlocklin

Jul 14, 2017
3 min

Life on the Line

I sometimes would sit at night looking at charts for NPC. There's a white line for pre-neurological symptoms, a grey line for...

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