HOPE FOR MARIAN

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

EVERY DAY STUFF TOO

Sandy Beach

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...

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...

April 16, 2017

Here are some things we've learned this week:

1. Contrary to what I always believed, it is possible for a stomach bug to last for seven days. And it is the pits. Seriously.

2. I love tv but I don't ever want to watch The Amazing Race episode where they pick the teams tha...

Please reload

Recent Posts

March 15, 2019

October 23, 2018

April 16, 2018

Please reload

Please reload

Tags

Please reload