An Upstate boy is battling a rare disease that is taking away his voice, ability to move and even his sight.
Five-year-old Kane DeGeorgis' family hopes to bring attention to the disorder is called Batten Disease, which impacts two out of every 100,000 children and has no known cure.
Some of Kane's photos show a little boy ready for Halloween, splashing in the water and having fun as a rambunctious toddler, but now, his life is changed forever.
"It started about like when he was three years old," said Brian DeGeorgis, Kane's father. "He was potty trained early. ... Then we noticed that he would just kind of fall all of a sudden and had a little trouble getting back up."
DeGeorgis said the change happened so quickly.
"I got it on video. ... He was bouncing around on the bed in the hospital, and he was having so much fun, and it was like the next day, he couldn't sit up, he couldn't walk," DeGeorgis said.
He said Kane had a grand mal seizure, and that's when they knew something was wrong.
"Dec. 3, 2012, that's when we got the, my daughter's birthday. That's when we got the diagnosis," DeGeorgis said.
Batten Disease affects the nervous system and the brain. Kane now spends most of his time in a special wheelchair, needing support to keep him in place.
"I wish I could do the things that a normal father would do, playing baseball and football and take him fishing, and all that's gone now," DeGeorgis said. "I just try to make him happy and that's my goal for Kane, just to make sure he's happy."
DeGeorgis said it is the toughest fight he's witnessed, and he's seen fights overseas as a war veteran, with metals and certificates adorning his livingroom wall. From the Kosovo War to Afghanistan, DeGeorgis was in the 82nd Airborne before joining the National Guard.
"We got deployed to Afghanistan, and I was over there for about 18 months," DeGeorgis said. "While I was over there, my ex-wife was pregnant with Kane, so I was lucky enough and fortunate enough to come home and see him born."
DeGeorgis said he always wanted a boy and a girl, and he got that.
"So I'm real proud to say Kane is mine," DeGeorgis said.
Kane likes to play with toys that make noise, and his eyesight is nearly gone. Much like a newborn, his muscles are barely able to support him.
"He needs 24-hour care," DeGeorgis said. "I've got to have my eye on him every second of the day. He sleeps with me. He's got to be right beside me or beside Jessica. He's got to be right by us."
Kane's decline devastates DeGeorgis. As his son is taken by the disease, DeGeorgis hopes others will learn about it, and that one day, it will have a cure.
"Nobody knows what it is. Your ordinary person out there walking around has no idea about Batten's disease and what it does," DeGeorgis said. "It is very devastating."
The DeGeorgis family has set up a Facebook page to share about Kane's illness, posting photos and information on fundraisers for those looking to offer support.
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Sunday, March 9 2014 9:32 PM EDT2014-03-10 01:32:37 GMT
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