Monday, September 7, 2015

Cystinosis


Many of you may be fans of Annie, and follow her blog, and Facebook.  You are probably aware of our deep love for sweet little girl named Emma Grace.  If you haven't heard about Emma Grace yet please let me tell you about her.  

Emma Grace is the sweet daughter of a dear friend of mine, Shelly.  Shelly's mother Kathleen Starr of Starr Fabrics, has been a long time friend of Annie. They often team up and help each-other at Quilt Shows all across the country.  I met Kathleen while I worked the rounds on the Quilt Show with the ByAnnie team.  Shelly and her girls often accompanied there mom, and grandma and helped at the shows as well! We have become great friends. So you can believe that we were so sad to hear about the diagnosis of sweet Emma Grace.  This was taken from the GOFUNDME page set up for Emma Grace...

  On June 17th, 22 month old Emma of Scott Valley, CA was diagnosed with a rare and incurable condition, Cystinosis. Cystinosis is a metabolic disease that affects 500 children and young adults in the U.S. and only 2000 worldwide. The disease causes cystine crystals to build up and attack all of the body’s organs, as well as muscles, white blood cells, eyes and the central nervous system.

Emma pushing her own meds.

Shelly had contacted me to see if there was a bag that I could make for her that could hold all the meds that Emma would now have to be given each day. Of course I wanted to help in this small request. Annie graciously donated some bag making supplies and Heather of Fab Fabrics, donated the fabrics and I got sewing.  I made this bag for Shelly and Emma. It is Annie's pattern Picnic in the Park, we modified a few things to add more pockets on the lid. 






As you can see this bag holds lots of very vital mediations for Emma. We are so happy that we could offer our little bit of help to this sweet family.  Please check out the GoFund Me page and donate if you can.  ALSO, check out Annie's Newsletter for a 10% discount on all orders using the discount code EMMA.  This offer expires on Sept 14th. They are encouraging all who can to share their savings on the Go Fund me page for Emma. 

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Please help Emma continue to fight!  



Also check out this cute video of the girls.  Kati who works with Annie supplied all the coloring books, crayons, and fun prizes for the girls, while Annie sewed up these darling Fetch Your Sketch art portfolios for Emma and her Sister Lilly Anna.


Emma Grace and her sister Lilly Anna

Continue following Emma's fight on Facebook through the page updated by her incredibly self-less, caring, and strong Mother of hers.


As always thanks for stopping by. And thanks for sharing your heart with this special family!

XOXO -Kait

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