The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Sunday, January 29, 2012

Day plus 12

The day got away from us. I spent time with the family while grandpa took care of Alice. It was fun to be home for a couple days and catch up with Natalie and the boys. We are quickly coming to terms with how difficult it is to keep up on Natalie's medication. She has a couple meds that require a pump to administer. One of them takes around 8 hours to finish, so she carries it in a backpack around the house. There are so many that I'm having trouble keeping them straight. I'm grateful for Lisy's attention to detail.

Alice is still having a rough go as she waits for her marrow to engraft. She sleeps most of the day, but will have periods of energy when the morphine has kicked in. I wanted to post a couple videos; one of when she is having a hard time, and the other( which was taken shortly after) when her pain killer had started to have effect. Just wanted to show how different she can feel when things are good and when they are not so good.


  1. Poor beautiful Alice. I really can't imagine trying to take care of such a little one when she's so so sick. I'm so excited and hopeful that she will be feeling better soon and that you'll all be back together. The whole ordeal makes me want to be a better person, because I love my family and I want for us to be together forever. Thanks for your wonderful example lights.

  2. Poor little Alice. We are all so anxious to hear that she is improving. It was so wonderful to visit with Natalie, Matthew, and Blair via Grandma Schellenberg's ipad yesterday! Everyone looked so good and it made me so happy! Something about you Fishes always has that effect on me. My kids continue to pray every day for "more miracles" and "more angels" for the Fish family. Let us know if you are feeling overcrowded with heavenly helpers and we will try to tone things down a bit. Until then, everyone one of us thinks of you constantly and carries a prayer in our heart for each of you. We love you! -The Strongs