connor has been struggling again today:( he's been super agitated and uncomfortable all day long. so it was a great surprise and much needed boost of happiness when the wonderful woman who sent connor his tiny super hero cape wrote to me to say connor's post is up on her blog! it's so beautifully written, i am so in awe of the what she does and what she did for my sweet boy. here is the blog post link: Super Connor — TinySuperheroes
i have probably read it a million times already today......and i've already read about all the other tiny superheroes, too. they are all so amazing! i love that there are such good people in this world, people that do so much to help others. i hope one day i can do something so awesome.
i love the TinySuperheroes
blog. and i love my tiny superhero. yay for super people!!
Hello Crissy, my name is Corey. I started following Robyns Tiny Super Heros Blog since Robyn featured my 6 year old son Casen. Casen who has a RARE degenerative brain disease also. When Casen first began showing signs of the disease, clumsiness, and slow learning abilities, we just contributed them to as being a boy. It wasn't until Casen had his first seizure at the age of 2 (just shy of his 3rd birthday), we knew something was definitely wrong. The Dr's ran many tests with negative results. Anti-seizure meds were tried with many different combinations. Finally a second neurologist ordered a muscle biopsy. The biopsy results showed Casen was battling a very RARE degenerative brain disease called Batten Disease. There are about 14 different forms of Batten Disease. Casen has the Late Infantile form CLN2 or LINCL. I don't know if your Dr's have tested your son for this or not. Ask them... If they haven't, ask them too.... Casen has his own Facbook page. If you look in the video section I have posted some videos of what Casen's seizure look like, and some of the stages of regression. www.facebook.com/casenscrusade
ReplyDeleteGod bless your family.... Corey
thank you for writing, i saw your sweet boy featured on the tinysuperheroes website. what an amazing boy! Connor HAS been tested for Batten's, he had a muscle biopsy done at the Mayo Clinic, which came back negative or inconclusive for anything at that time. i agree, some of the symptoms of batten's seem to coincide with what's going on with my son, not all of them, but definitely similar. he has never had seizures, for now anyway. he is a mystery, and it is so frustrating for me because i feel like i'm not doing everything i should be since we still don't know. thank you for writing and i will go look at your facebook page now. i hope to talk more with you. thank you for your support!
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