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.

Tuesday, February 7, 2012

Day 21--Alice

Thank you to so many for another great blood drive (Highland). I wish I could call each person who has helped in any way and personally thank you.

The days are feeling so long. Alice is improving each day (we think), but it's ever so slight. She vomits most of the day and night. Her poor little legs are so weak. She does not want to stand because she is too weak. Natalie was forced to get out of bed and walk to the bathroom throughout the day and night. I really think that made a difference in her strength recovery. Physical therapy comes periodically to help Alice, however, the real problem is that she is too sick to do much. Soon this will be behind us and the memories will be more sweet than sad, largely because of the much love and support we have been enbraced by.

It feels so strange each night as we gather for prayer, to have Alice away. When the children pray they ask that Alice can come home soon. We miss her so much. Her favorite place is under the stairs...the play closet. Her little kitchen set and dollies are there. That light under the stairs has not been on for a while.

It's amazing to me how much a little person can shape your life in two short years. Since she was born she has been a little bit sunshine to everyone.

I clearly remember about 10 months ago when she was ill in the hospital...I was having a really hard time during this stay and felt very scared. One night I was home with the other children and I was so restless and emotional. I gathered the older three children and asked them to help me because I was sad. We decided to pray, as we knelt down together and prayed for Alice, I remember telling Heavenly Father that we need Alice in our family and pleaded that she might get better. I soon felt a peaceful feeling in my heart and knew that Alice holds a very special place in our family, an important role...and yes we need her. No wonder it seems so empty without her around.

Tomorrow will be another day closer :)



  1. Lisy,

    I have been following your blog since you started it and keep thinking I am going to comment but never do. That first time I saw you in Wal mart after so many years and you told me about little Natalie, my heart went out to you. Then two years later when I saw you at Wal Mart again (lol) and you told me about Alice, again my heart felt very heavy for you. And now as I watch through your blog your precious girls go through this trial I am amazed at your whole family's strength. You guys are such good examples to everyone around you. I am thankful to be able to follow your blog and be able to learn so much about faith and adversity and so much more. My kids too, pray for yours. I can't wait to see them well and living life to the fullest. Good luck. You guys are doing a great job.


  2. I know that Alice will be home soon. It must be so hard not to have your family together. We're thinking about you all!

  3. I have been following your blog for quite some time now. The Grace your family has through such terrifying times is truly amazing. I have cried at the pain these two beautiful children have gone through in order to get well, but this entry really got to me. I pray every day for Natialie and Alice and the rest of your family. That light under the stairs will be on again very soon.

  4. Lisy, I think about you guys all the time. What a HARD trial this must be! We pray for you every night. I came across a great quote the other day and my thoughts turned immediately to you.
    "The most beautiful people we have known are those who have known defeat, know suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen. “

    --Elizabeth Kubler Ross

    Love you!

  5. P.S. I can hardly read your blog without crying. You'd think I would stop coming back! ;)