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...

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...

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:



March 27, 2017

Some adorable and dearly loved friends, not from The Hunger Games.

The title of this post is from The Hunger Games, I read all three books and saw three of the four movies. You have to draw the line somewhere and I just could not see the last movie. Phillip Seymour Hoff...

March 23, 2017

These are our beautiful girls who have our hearts and so much love for each other, too. Marian giggled her way through the day and is fighting for her health and this life with every ounce she has. The photo shoot wasn't all roses - but looking at these pictures you co...

March 22, 2017

Shoots & Giggles Photography

Yesterday and today were two very different days. Both put us face to face with both the grim reality of the NPC diagnosis and also the exceptional people that NPC has brought into our lives, and those that were already there. The two days w...

March 17, 2017

Emily and Marian, ages 3 and 6 months

All I ever wanted was to be a mom. When I was little, when people asked how many kids I wanted, my answer 13. Naturally, mostly girls. I had names picked out and probably took pretend play a step too far pretending my dolls were my...

March 17, 2017

Well, I must admit, I always kind of wanted a blog, but I never really had anything to say. Not to be confused with not having opinions - which I certainly have no shortage of. I always preferred to live my life privately. Now, unfortunately, I do have something to pub...

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