Tuesday, January 19, 2016

Special Thanks

This is unrelated to sewing and quilting, but I wanted to share a HUGE thank you from the bottom of my heart to Jerry Seinfeld! 

Some of you may know my daughter was diagnosed with an ultra rare genetic disorder at 2.5 months old.  It was a very trying time in our lives and an organization, Pachyonychia Congenita Project, was certainly a light in the dark for our family.  When specialists and an entire children's hospital all say "I don't know," you can't help but feel helpless.  PC Project provided us with genetic testing to confirm our daughter did in fact have Pachyonychia Congenita, and determine which mutation it was (in her case, K6A).  They reached out to other families around the globe with this same condition and helped us understand what we can expect in her future and how best to help her.  We even met families with PC for the first time last summer when we visited a Patient Support meeting in NJ.  Since we are isolated at home, it was wonderful to meet people face to face who face the same challenges as her.

Earlier this month, Jerry Seinfeld donated proceeds from his show in SLC to PC Project.  How incredibly generous of him!  His donation will be used to help PC patients and fund research to find a cure for this painful disorder.  PC Project put together this video to thank him and I was so happy to see my little girl featured in it.  We are truly grateful to both Jerry Seinfeld and PC Project!

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