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.

Thursday, November 17, 2011

Email From Lisy

Nov. 17, 2011

Hi Family,
Hope all is well with everyone. FYI--Natalie's baptism will be at 3:00 on the 26th. I ordered invitations and such online but realized they wouldn't arrive until just in the meantime, consider this your invitation. :-)

The bone marrow doctors called today a couple times. After much discussion, we have decided to transplant both Natalie and Alice together, if things continue to go accordingly. They have found a perfect match for Alice. They are matching 10 genes and all 10 match. The nurse said that they were very surprised to find this match as it isn't always the case to find a perfect non-related match, as well as being very surprised that it happened this fast. This is a huge relief for us. They said that the donor is female and younger. She must be at least 18 to donate. This is all we know about the donor; once a year has past we will be able to contact this person. They contacted the donor on Friday and all the testing was done by Wednesday. Apparently this is very unusual. It is normally a three month process. Because of this wonderful news we all feel like we should proceed and start Alice as well. She is healthy at the time, and has a match ready and available. It will be a rough go with two girls at the same time, but in the long run it will be easier. Here is a timeline: The Monday after Thanksgiving we will proceed with all the preliminary testing for Natalie, Alice and Blair. They hope to have Natalie admitted by Dec. 5th and shortly thereafter Alice. This means that her transplant date would be the 13th or so. By the end of January or so the girls will be able to come home if all goes well. While the girls are in the hospital, Matthew and Blair will be with Grandma and Grandpa Schellenberg maintaining a fairly normal life going to school, etc. Tyler and I (with Evie...if she cooperates) will be staying at the hospital with Natalie and Alice. Tyler is closing his shop at this point. Maybe he can open it again when we are through this--who knows. After transplant we will be staying in Highland together under quarantine. Obviously, we are going to need a lot of help with different things. We will need some designated people to stay with the girls on weekends or something. We will need help when we are home, etc. When we know more of what exactly we need, we will make a more specific plan. Thank you already for everything you have done. Most importantly and foremost we thank each of you for your prayers, etc. There is no question that Heavenly Father has been answering these prayers. Tyler and I take no credit for any of our blessings for we know they come from those who have been praying for us. We love you!!

Lisy and Tyler.

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