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, February 5, 2013

Hearing Test and Platelets

I had anticipated Alice being in a dreary mood upon my arrival today. I was wrong. As I opened the door to her room there were a few nurses already working on various tasks to help Alice feel more comfortable. There was enough commotion to allow me to sneak in without being noticed by Alice. I quickly walked out of her view behind Lisy and the nurses to the side of her bed where I could be in her view. When she looked up and our eyes caught each other, we shared a smile. It is such a relieving moment for me as a parent any time our children smile at me, not because of the trinket I may have given but simply because they are glad to see me and accept my presence.

Alice received platelets today and had an audiology appointment to analyze any hearing loss from the chemo. I wasn't there for it, but Lisy had reported that she passed the test and was not showing any signs of deterioration. This is a relief to us as were are still dealing with Natalie's hearing situation and how to find a solution through surgery. I have hopes that Alice will be able to come home by this Friday. It would be nice to have the family together by the weekend. We are so grateful for everyone's prayers and help. Its hard to believe you all have been helping us for over a year now. As a father I could never be more grateful for the help you have rendered to my family. Thank you.


each time Alice hears the beep in her ear she puts an animal in the bucket.


  1. Wow! Sounds like she did really well. I would probably struggle with taking one of my kids for a few hearing test in Ottawa. They're just too rowdy. Thanks for sharing!

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