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.

Sunday, January 22, 2012

Matthew's Messages

Our Mean Faces

A Good Attempt To A Mean Face

First of all, we need to thank all those who participated in the American Fork blood drive. Tyler's sister said they had a great turn out. Honestly, the blood drives are huge in helping the girls and such an amazing way of literally giving a part of yourself.It got me thinking about possibly how many blood donations Natalie and Alice have used in the past years. I figured Natalie alone has required blood units from hundreds of people over the last 6 1/2 years.
During this transplant process alone, they require a lot of blood. When someone donates their blood they are giving red cells, platelets and plasma--all of which are very necessary during transplant. For several months to follow both Natalie and Alice will continue to receive transfusions.
Some of the infusions will include good antibodies known as IVIG which will help greatly in keeping them healthy. This is a product of the plasma.

Many people have suggested essential oils. Thanks Emily for the oils. We are excited to implement them into the healing process for Natalie and Alice...and the rest of the family :). Once the girls are off certain medicines that can poorly interact with the oils they will be able to benefit from the good nature of the oils, so thank you..thank you.

Okay, because again this is our journal...we wanted to include Matthew for his bravery in being the sticky glue for all of us. That was the responsibility he was given before this all began. We knew he was a very important person, and we gave him this assignment because we know it is his nature. He has been calling us often and checking in with us.
He has provided so much fun and comfort to the girls. Alice asks to Skype to Matthew everyday...Natalie can overcome any anxieties when Matthew talks her through things. He has been so amazing. On the other hand, Matthew has been really tough and strong to be away from Mom and Dad. He loves his family and this has been equally as hard on him as anyone. If not at home with us, his next favorite place is right where he has been at Grandma and Grandpa Schellenberg's house. We are so thankful he and Blair have had a wonderful place to be.

The movie below is just audio...just some of the many sweet messages Matthew has left me, I couldn't get myself to erase them until I preserved them.

Again, thank you to everyone for all the amazing help.



  1. YOu are so smart to remember these things and even though WE see what our other kids are doing and how important they are, it's SO IMPORTANT to let them KNOW we notice and appreciate them! Our middle son struggled with many emotions through both transplants with big sis getting tons of attention for donating and of course Emily for having the BMT's. It is hard not to feel left out. It takes a lot of effort and help from others to remind the others how important and NEEDED they are. You are doing an amazing job!! We are praying for good counts tomorrow!!

  2. I love your kids. They are such good siblings and truly love each other so much. When I was thirteen, my two sisters and parents and I moved to Argentina for six months. It was a hard time, not knowing Spanish very well and feeling like the culture was a little too different. But my sisters and I got closer together because we knew that all we had was each other. I know it's the same for you and your kids. Family is the most important thing and they are learning this at a very young age. We love you!