Here is their new blog: Kyla's blog
Guess what?!! I was emailed a few days ago by a MOM from Wichita, Texas that has a little girl named Kyla that is 6 years old. She was diagnosed with the EXACT GENE MUTATION as Luke. (the Rapsyn gene)
That makes 2 kiddo's that have the exact mutation. Kyla from Texas and Nathan from France! Wowsie!
I talked to Kyla's mom and her name is Sabrina. She is 30 years old and the really amazing story is that THEY HAVE A 2nd CHILD!! AND.......their 2nd child does not have CMS! I was amazed to hear this.
With this said, we are excited that we live so close! Well, close enough to drive that is. We'll have to fly to France to see little Nathan when Luke gets older!
Ok blog fam...community, community. That's my heart for my Lukester.
Big hugs!
Picture below of Kyla! She's so cute! And the one below that is mom and her 2 girls! How fun!
Younger picture of Kyla below and older picture with mom.
1 comment:
Dear Luke's family,
I am a friend of Kyla's family and I just wanted to let you know how excited I am that you found each other and that you can be an encouragement to one another. I enjoyed learning about your story and I look forward to seeing the progress that Luke will make. He is precious. --Sheri
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