I just had to post this. Ok...it's been a long time but with me creating Luke's CMS BLOG ....I had a dad contact me from France. His name is Philippe. His son's name is Nathan.
His son is 21mths old and has the EXACT GENE MUTATION of CMS. The Rapsyn gene. Meaning, Nathan and Luke have exactly the same genetic 'gene' that is considered defective. I hate saying it that way...but you know what I mean. It's hard to explain the genetics without saying words like "defective, mutate". Etc. I like to word that one of my gene's and Jon's gene collided. But..the neuro stares at me with confusion when I state this. LOL
Ok..! So..here is Nathan. Luke's first CMS friend and penpal. He's a FRENCHBOY!
I did write the father and told him that if by chance Luke/Nathan ever meet..... would it be ok if we opted to fly to France?!! LOL. Translation: We want to come visit and stay with you for 4 weeks and you be our tour guide. LOL again.
Doesn't he look just like Luke?? It's crazy!! He started on mestinon at age 4mths!! Yes..you got it. 4mths! He was diagnosed at 6mths!! France must be way ahead of the ballgame. I was a bit upset to read that. So...with that said, Nathan is finally walking! The dad told me to get ready as when Luke walks it will be an emotional day for us. You bet Philippe! It most certainly will.
Ok....hope you enjoyed blog family. I'm just desperate to build my baby's community for him so that when he's older he'll have friends! Can't wait to see what God has in store for Lukester and Nathan.
Oh----P.S. Yes, Nathan has a tube. Their stories are crazy similar. The dad said it's unbelievable to read Luke's story as it's so familiar to him and his wife.
Love ya'll so much,