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ncgrammie
April 19th, 2013, 07:45 PM
Hey Everyone, I originally posted about Caelon under my Hometown Valor thread in Show and Tell and I have an update. First, thank you for all your prayers and good thoughts. Caelon and his family have been at Bethesda since Sunday to find the reason for all his strokes. They found that he has an enzyme deficiency! Three years of agonizing terror for his parents and they finally have answers. I have to say God IS good. There are three other children recently diagnosed with this same condition, and it is so new that it does not have a name yet. Right now they are waiting on FDA approval before they can start treatment. There is much more on his Caring for Caelon Facebook page. Is it ok to ask if anyone is on Facebook to “Like” him? He is 37 Likes from hitting 11,000 and he really wants to hit it. I am so very grateful to God for all He has done to for this family and especially this little treasure. I am grateful to all of you for your prayers and well wishes. Thank you.

Karena1984
April 19th, 2013, 08:19 PM
Can you post a link? I'll like it and I'm sure I can get a lot of others to as well!

ncgrammie
April 19th, 2013, 08:25 PM
Sure! Duh...I didn't think of that. https://www.facebook.com/CaringForCaelon I hope it works. Thanks for mentioning it Karena.

Karena1984
April 19th, 2013, 09:10 PM
I liked it! He's an adorable little man! I'll pass the page along so he gets more!!

ncgrammie
April 19th, 2013, 09:18 PM
Thank you Karena! He would love that! He is such an adorable child. He is one of those happy people who are always upbeat. Everyone loves being around him.

Sandy Navas
April 19th, 2013, 09:43 PM
No longer a FB user - but I'll add him to my prayer list. Thanks for the heads up - I missed your original post.

ilive2craft2
April 19th, 2013, 09:48 PM
His likes are slowly going up - hope he hits his goal. So glad they figured something out! Praying that they will find a treatment that works. Lisa

WVGranny
April 19th, 2013, 09:50 PM
Posted to my facebook also I'm sure he will make it

MRoy
April 19th, 2013, 10:50 PM
He got a like from me! He's a sweet little guy!

Lisapc
April 19th, 2013, 11:00 PM
I just did my like for him. Poor little guy!

Winniesfriend
April 19th, 2013, 11:33 PM
I "liked" him, it looks like he has been on a rough journey, yet he is still smiling, what a great little kid.

ncgrammie
April 20th, 2013, 12:52 PM
Thanks Sandy! Prayers are powerful and help more than Likes. I deleted my FB account also. But what is a step-grammie-to-be to do when the little guy watches for them? I opened another FB account and while nothing is on it, I can give him an extra number and also keep up to date long distance. I will probably delete this one later too. Shhh.....

To Caelon this is normal life. His strokes started when he was around 18 months old and has had hundreds, if not thousands, of strokes that they haven’t been able to count. Every time he learns to walk again or talk again he has another major stroke and has to relearn walking or talking again. It’s just part of everyday life for him and he does it, every time. This last stroke really scared us more than the others because it caused the blindness in his left eye. The good news is he is regaining some light perception in his left eye and the boy just keeps going and going with a smile on his face.

Their hometown is having a BBQ fundraiser for him Saturday that we will be going. There will be updates before then but I will get to see them and will update more after I get home.

You guys are the greatest. I appreciate your support and kind words more than I can say.