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.

Tuesday, December 27, 2011


Yesterday started slow as Natalie's blood counts had become low enough to require another blood transfusion. The low blood count reveals itself by paleness and low energy. She did not wake up until around 11am, which is very unusual for her. The doctors are still concerned for her lung and therefore are keeping a close eye on it as her condition can change in an instant. They have taken a chest x-ray this morning and will let us know later on today of any changes. She did complain this morning of her throat and mouth starting to hurt. Which means, it is the beginning of her mouth sores.

Below is a link to a short video I took of her while she slept. The quality doesn't show contrast of her skin pigment compared to mine as well as I would have liked. However you can see her complexion is pale and weak due to the effects of chemo.

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