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, May 2, 2013


The night we were boarding the plane to return home Natalie began to feel sick and was brewing a fever.  We gave her some Tylenol.  It seemed to break the fever.  We were in such a hurry to pack I had unintentionally packed her seizure medication in the check on bags.  Luckily I had already given her evening dose to her and only needed it with me for when we arrived in Salt Lake.  We flew home through the night.  All was well, each of the children slept most of the way.  I couldn't get comfortable no matter how hard I tried.  I watched a couple movies and relived the vacation in my mind.  Natalie was lying on me.  She remained fever free the whole time.

When we arrived home we all jumped in the shower/bath to clean up before seeing Alice and Evie.  Tyler's dad brought Alice home and my parents brought Evie home.  It was so good to see the girls.  Evie gave everyone a huge hug, except me.  I suppose she was mad or confused at me.  I was sure to fix that and kissed her little cheeks a thousand times.

By 9:00 in the morning nearly an hour and a half after being home we were so exhausted that we each began to crash at different times.  Our bags were strung out all over, it was chaos.  We completely forgot we hadn't given Natalie her seizure medicine.  As the day passed on I eventually got both the little girls to take a nap.  Natalie and the boys had been watching movies, and had fallen asleep.  I decided to take a nap myself.  I was sure to check Natalie before I laid down.  She was doing fine, no fever.

The next thing I knew Tyler was calling for me with great concern in his voice.  I jumped up and ran to Natalie.  She was mostly non responsive.  She wasn't holding her head up well and couldn't communicate much at all.  I could see in her eyes that something wasn't right.  She was drooling and acting funny.  I held her quickly and check for vital signs.  Tyler had already given her Tylenol and her seizure medicine at this point.  I can't express how thankful I am for Tyler being there for her just in time.  She then proceeded to seize completely.  It became aggressive and uncontrollable.  I held her still to prevent any additional injury and had my hand in her mouth with a clean cloth to prevent her from biting her tounge or mouth.

I was frightened and crying as I felt so helpless.  There was nothing more we could do....except call 911 and wait and hope that she would stop seizing.

Within three minutes or less the Lone Peak Fire Dept. arrived.  I have never been so happy to see anyone in all my life.  I was SO impressed with how fast they responded.  Every moment was critical for Natalie.  The four men that came to our rescue were absolutely phenomenal.  They were so good at what they had to do to help stabilize her.  The IV was placed and nasal versed was given.  After a few minutes she was calming down but totally non responsive.  Her breathing remained good, thankfully.

We are so thankful for the exceptional rescue these men gave Natalie.

We had neighbors show up and help, that was awesome, we love our neighbors.  They removed the boys from the scene as I wasn't able to, but will always remember the look on Matthew and Blair's faces.  I noticed that before the neighbor took the boys to her house, the fire marshal put the boys to work doing other things, and I now realize his intention.  So impressive.

Tyler rode in the ambulance with Natalie and I came shortly later.

We think this is what happened.  She must have some sort of illness stirring and causing the fever.  It is possible that it could be an ear infection, reoccurring sinusitis, or a virus.  A fever lowers her threshold of seizing.  She hadn't had her seizure medicine that morning.  And I think she was slightly dehydrated.  I felt like I was constantly asking her to drink more while in the sun and such.  She never wanted to drink much.  I began to almost force her to drink.  All of these factors together contributed to her seizing.

Tyler and I were extremely worried about her as she wasn't able to move the left side of her body for sometime afterward.  We worried that she may have had a stroke.  It was troubling.  Finally after some hours in the ER she began to show movement in her left side.  She is now fully functioning with her left side.

When all the chaos blew over and Natalie was stable, Tyler and I sat beside her bed talking over everything. We are thankful this didn't happen during our flight home.  We are thankful it didn't happen while away from home, earlier in the week. We are happy she was able to have a wonderful time...and especially we are thankful she is okay.

I didn't want to leave the hospital and return home until I felt she was mentally stable.  I asked her as I was leaving, what her favorite part was about the trip.  She said, "The fire throwing part" (The Polynesian Cultural Center's show HA-The Breath of Life---It truly was incredible).  I then felt better about leaving.  Tyler remained with her.  I knew I needed to be home with Evie.

Tyler told me that just before Natalie became non responsive she looked at him and said, "Dad, I don't want to die."  When he told me this I wanted to cry even more.  Of course she was frightened of what she sensed was coming.

Natalie you are so strong...WE LOVE YOU!!

Natalie asked each day that we were in Hawaii if she could stay for a whole year...but with the request that Alice and Evie join us.  The kids kept telling Tyler that he needs to get a job in Hawaii.  The trip was INCREDIBLE!!  We had a wonderful time!!  We are grateful for Make A Wish.

We are so excited for Natalie to come home...hopefully tomorrow!  She is anxious to go through her Hawaii souvenirs.  We hadn't much of a chance to unpack.

We also can't wait to post about our trip.  We have lots of pictures and movies to post.

Many thanks to the Disbrow's and Grandma and Grandpa Schellenberg for taking care of Evie.  Many thanks to Grandmother and Grandpa Fish for taking care of Alice, and for Amber; she did all Alice's IV medications and oral medications.  She did an incredible job.  Amber even spent the nights with Alice.  She woke at night with Alice helping fill her needs and requests, which is not an easy job.  Thanks!!!


Completely exhausted and still recovering from the seizing.


I was so happy to see her smile for me.  She looks tired but cute.

They missed each other.

Great Pals.  Happy to be together again.

They love the Hawaii dresses we brought them.  Alice has a new red cast.


  1. So glad Natalie is okay. She seems like such a strong and faithful girl...just like her parents.

  2. How many lives does that girl have!! She is NOT ready to die!! I am so grateful another miracle has taken place. I hope she recovers quickly! We love you guys!!!

  3. Poor Natalie, I'm so glad she has the right people to look after her!

  4. When I read Natalie's words, "I don't want to die", the flood gates opened. And I don't even know Natalie or you! But this beautiful little girl has been through so much (as have the rest of you), and she is such a clear light. I love that you have a lot of support in your lives.

    I'm glad that you had a fun vacation, and I am looking forward to photos.

    Sending well wishes to Natalie.

  5. OH my heart wrenching agony! I am so grateful (like Jeri) that the right people were watching over Nat. Sweet sweet Natalie and all your awesomeness...
    My prayers are ever with you, Tyler and Lisy.

  6. tears! oh sweet sweet natalie!
    my prayers are with your dear family always. so glad shes feeling better & everyone is back together.