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.

Wednesday, August 22, 2012

Hula Dancer/Matthew in School

Here is a quick update.

Both Natalie and Alice are doing alright, each have been dealing with minor issues lately.

Alice's stools are looser again.  We realized there was an error in her medication dosage on our part, so we have fixed the problem and hope that her body can get back on track.  She looks great and feels good.  Her swelling has improved a lot.

Natalie's feeling more tired and looking pale.  We feel it is due to her oxygen situation at night.  Monday we will have the pulmonary testing done.  It's possible it is something very simple and easy to correct, or something less favorable.  I have arranged a better oxygen distribution for her at night.  She now sleeps with two blow-by cones on each side of her pillow.  It's working so far.  We have tried the nasal cannula and it's far too stressful to deal with.  The next step...if needed would be to create a sort of oxygen tent on her bed.  More news to come on the subject.

Matthew is as happy as can be.  He had a great first day of school.  Blair can't wait to join him next week.

Matthew's first day of school.

Evie seems excited for Matthew.
We all came out to see Matthew off.

The gang.

Here are some funny stories:

Today Evie pulled my hair and I said, "Ouch that hurt," as she held a strand of my hair in her hand.  Alice looked at me and said, "Don't worry Mom, there's another one hair," pointing to my head.  Yes, Alice you are right I do have more hair, I shouldn't let it bother me.

The other day Natalie came running to me laughing.  She wanted to tell me a funny story.  She said she was outside playing and over heard some other children talking, they said, "Why is that boy wearing a pink shirt?"  She found it funny that they thought she was a boy because her short hair.
I was happy to understand that she was able to see humor rather than embarrassment.

Yesterday I was trying to make my bed and became distracted with the two little girls.  We began playing and dancing.  I had my camera close by so I took a video of Alice and Evie.  If possible watch it on fast will be more funny.  When I showed it to Alice I set it on fast forward.  She laughed so much I wondered if she would loose her voice.  We have nicknamed Alice the Hula Girl.  I have no idea where she learned how to dance like that...the clip is a little long.



  1. So adorable! Who's singing the cover song? It's my favorite of all time and I'd love to get a copy.

  2. Loved this!!! Jake and I smiled and laughed through the whole thing. :)