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.

Monday, September 21, 2015

Long Time

WOW, I can't believe a whole summer has come and gone and I never posted on this blog.  I actually lost a lot of information from my phone regarding doctors appointments and notes so I feel totally lost in what to post.  I will have to just summarize and post the things I can remember.  I will start working on a post that will cover our summer, etc. but for now I'd like to invite anyone who hasn't yet had the opportunity to become a member of the bone marrow registry, to become one now.

This coming Saturday my wonderful nephew Garrett Cutler is holding a Marrow Donor registry drive for his Eagle scout project.  If you have thought about joining at all...ever, if you've had that nudge, now is a good time to do something about it.  Even if you can't make it Saturday or do not live in the area, you can still join through Garrett's efforts via internet.  The following flyer has all the details.

I am looking forward to being there on Saturday to support Garrett and answer any questions people might have regarding the whole process....I hope to see some of you there.

Lisy

p.s. Also if you have already joined the registry, Garrett is also holding a bake sale during the drive to raise extra money to donate to 'Be The Match'.  And I'm not going to lie but his Mamma is the best baker lady in town, so it will be well worth it.

p.p.s. The location of the marrow drive/bake sale is in LEHI--the address is on the flyer.


Okay here is a working link to Garrett's marrow donor registry drive.
http://www.bethematchfoundation.org/site/TR?team_id=46443&fr_id=1960&pg=team#.VgLbOI9VhHx



Posted by at 9:17 PM

4 comments:

  1. MelanieSeptember 22, 2015 at 1:15 PM

    ok, I just registered online! I wasn't able to access the website using the web address on the above flyer and I never came to a place to enter the promo code GarrettC, so instead I just went to bethematch.org and filled out the online registration. I don't know you, but I've followed your journey with your girls on your blog - you are an amazing family!!! So glad I was able to take a few minutes to do this today!

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  2. SavageSeptember 22, 2015 at 9:04 PM

    Lisy, AWESOME! I am going to do this. XOXO

    ReplyDelete
  3. amandaSeptember 23, 2015 at 7:08 AM

    Our friend's son did this as his eagle scout project. It was the story of your girls that inspired me to register. Someone asked me (kindly, our of simple curiosity) why I did. My response: if it were my child who needed it, I would want someone else to have registered too.

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  4. lisySeptember 23, 2015 at 10:51 AM

    Thank You! Thank YOU for joining, all of you...yes it's true, when we imagine things as "if it were your child, what would you do" it changes our motive and puts a bit of fire under our feet. We will look into the link and make sure it is working properly.

    ReplyDelete

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