HOPE FOR MARIAN

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

EVERY DAY STUFF TOO

Sandy Beach

April 23, 2017

 My mom and I. The eighties. 

In college in Pennsylvania I used to wear a Frankie B. winter coat  that was waist length, bright orange with stitched hearts and lined with faux fur. It was the coolest. I gave it away after reading that Marie Kondo's minimalist book...

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...

April 11, 2017

Today we woke up with a start at 1:30 a.m. Marian coughed in her pack and play and Paul and I had the same thought, please don't throw up. We unknowingly brought a stomach virus with us from California, and throwing up is not allowed within 24 hours of the treatment be...

April 5, 2017

I have been taking something major for granted - and that is that Marian can get access to cyclodextrin. We haven't even started treatment yet and already my mind is racing about how we will make it work, how difficult it will be to do this every two weeks forever. I'v...

April 1, 2017

We were so fortunate this morning to interview with the wonderful Darsha Philips and ABC7 to raise awareness for our Marian and Niemann-Pick Type C (NPC).  

For more information about NPC and our story please check out:

www.gofundme.com/hopeformarian

www.facebook.com/hope...

April 1, 2017

This week. So glad it is almost over. We went to the hospital for appointments three times this week, which was about two times too many in one week. A feeding evaluation, swallow study, and a half day neuromuscular clinic appointment. Tuesday was the feeding evaluatio...

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