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, November 2, 2011

Email From Lisy

November 2, 2011

Hi Family,
Today we met with the immunology team for another consult. This meeting was very helpful for Tyler and I. The Immunology doctors have done a lot of research and work in our behalf and we consider their opinion to be heavily weighted. They have provided us with more information regarding future outcomes in proceeding with transplant or choosing not to transplant. We received good news and bad news today. The good news is that Blair is a match for Natalie. The bad news is that we do not have a sibling match for Alice. We really thought maybe Evie would be a matched or hoped anyway...she is not. Thus, our situation has changed a bit. Because Alice does not have a sibling match, they will begin searching on the registry list. This process can take a while...a few months or so. In the meantime we are highly considering beginning the process with Natalie. The timing for this will take a few weeks...each Natalie and Blair will have some extensive testing done prior to the procedure. We are not sure when all this will begin. Again we will continue to keep you posted. Thanks everyone for your support, etc.

We love You!
Tyler and Lisy

1 comment:

  1. Its good that you are doing everything from your side to keep her healthy and find the best cure for her. All my prayers are with you and I pray that you find the cure very soon. God bless her.