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 18, 2012

Stylish Hair -- Zumba Fest

Thanks again to those who are heading up the Zumba Fest.  To the right is more information about the event.

This morning when Alice woke she said, "I feel better Mom!" with a giant grin on her face.  She also said, "look, my feet are little."  It was true they were much less swollen this morning.  She proceeded to explain to me that she wanted to get ready in a dress and wear shoes.  Note: her little feet have been too swollen for shoes.
We combed her hair and tried on a dozen different hair clips until she found just the right one to match her dress.  In the picture below are the boots she wanted to wear...Natalie wore them when she was little.  Honestly I was surprised and happy to see that Alice's feet squeezed into them--she was right, her feet were littler today.
She actually wore them for nearly two hours.

So cute Alice!  Her hair is getting longer.  Alice's hair is darker and more curly then before transplant.  The back side is more curly than the front.

We are going to miss those cheeks when they are gone.

Here is Natalie's stylish hair.  I tell her all the time that she looks great with no hair, short hair and long hair.  Anyway she does's cute.  It's amazing how quickly the girls' hair has come in.  Natalie's hair came in darker yet still straight.

Natalie, Matthew and Blair met their new teachers today.  Matthew and Blair are very excited to start school next week.  As we were leaving the school today Tyler and I noticed that Natalie was holding back some tears.  We asked her what was wrong.  She expressed her disappointment that she won't be able to start school next week.  She feels as though January cannot come soon enough.  Despite her disappointment she was glad to meet her new teacher.  Tyler and I reassured Natalie that we would play a lot of games and read a lot of books while the boys are away at school.  Natalie reassured us that we will be too busy taking care of Alice and Evie.  She does have a valid point.  It seems as though we will need to make some appropriate adjustments in order to satisfy both parties.  It is true that we will feel an absence of Matthew and Blair when Natalie is needing someone to play with.  On another note; when she complains that they tease her and bother her to the point of complete frustration, Tyler and I will remind each other that some good will come of the this.

This past Monday as we were leaving the hospital, Natalie saw another bird--she decided to chase it.  She actually caught it.  I didn't see it happen, so when she came running up to me she was laughing so hard that her words could hardly form as she tried to tell me what happened.  Then she said, "Mom, I need some sanitizer."  She must feel a surge of excitement to touch things that typically she isn't able to.  Children are supposed to interact with animals and such.  I was happy she caught it and that she felt the bird's feathers.

It's amazing sometimes what simple things we take for granite.  Naturally we don't realize what that is until it is challenged.


Many many thanks to all those who helped with the 5k.  We had a lovely visit with Julie and Jillyn last week, they have done a lot in our behalf.   They did go home with pedicures/manicures from Alice.
Natalie, Julie, Jillyn and Alice


  1. i named my doll after alice and my other doll after natalie love emily heaps

  2. we loved seeing Alice's sweet princess face as the primary children poster child for the fundraiser in places like Walmart. So cute.