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.

Saturday, August 9, 2014

Birthday Girls!

Happy Birthday Evie (3) and Alice (5)!

Evie's birthday is August 2nd and Alice's is August 8th.  I think it's best to celebrate them together when they are young.  It would be easier for me and for them.  It was hard for Alice to watch Evie's birthday and then the very same thing in reverse. I'm sure when they are a bit older they will prefer to have a separate celebration.  But next year it's going to be one party....can't wait.

I will say that Evie was the sweetest and most polite little thing all day on her birthday.  When she woke she was singing to herself the Happy Birthday song.  All day she was pleasant, even opening presents.  She shared everything with Alice.  I was so proud of her...impressive for a three year old.  Evie is such a lively fun girl.  

When Alice woke on her birthday, she came to my bedside very early in the morning and said into my face...."Peek-a-boo, it's my birthday!"  She then proceeded to the bathroom where she planned to comb her hair and look her best for the big day.  Shortly after I heard some whimpering from my bathroom and went to see what the trouble was.  She was discouraged, and said that she cannot be beautiful for her birthday because her hair had a bump in it that she couldn't comb flat.  She looked at me and said, "Mom, I need a birthday hat."
Not exactly the birthday hat she was hoping for....too big! 

Every day with Alice and Evie is an adventure...usually exhausting but surely I will miss these days when they grow older.  I over heard them playing with their dolls, each Alice and Evie were acting as  Mommies....they were talking about how their babies had too much diarrhea.  Such is the reality of Alice's life.  It was quite silly actually.

August 2, 2014
Tyler and Birthday Girl....Evelyn!!!

The simple way to do things.

Disbrow Cousins

Happy 3rd Birthday Evie!

Landon with Evie.

A new car!

August 8, 2014
The Big Five!
Evie, Natalie, Alice and Addie.

Alice and Cooper.



  1. Miss you! I can't believe my Alice girl is five! Give her some loves from me!! Can't wait for your new baby!

  2. "Happy Belated Birthday" to two of the sweetest girls that we know! We love all of you! Love, Aunt Cindy, Uncle LeGrand & Cousins Lisa & Steve!