WEB EXCLUSIVE: Community rallies around boy with rare illness - KLTV.com - Tyler, Longview, Jacksonville |ETX News

WEB EXCLUSIVE: Community rallies around boy with rare illness

SYLACAUGA, AL (WBRC) - A little boy in Sylacauga is beating the odds. Doctors told his family he probably wouldn't live past nine months, but this November he'll turn five years old. 

Jackson Thomas has a rare disease called Rhizomelic Chondrodysplasia Punctata or RCDP.  "It means he can't move, talk, walk or like do anything normal kids can but he tries to," says Jackson's brother, Taylor Thomas.

RCDP is a terminal form of dwarfism and there are only about 150 known cases worldwide, including two in Alabama.  That's why the Sylacauga community is rallying around Jackson and his family.  Thursday night they had a dinner and silent auction to raise money for the Rhizo Kids Foundation.

Tangie Collins helped organize the event.  She was one of Jackson's early intervention teachers at Chehaw Regional Health Center.  "We actually graduated him in a cap and gown and he has just been very special to us ever since," said Collins.

Fighting back tears, Collins described why Jackson is so special, "He is such a blessing," Collins said, "He's so small and he just has such a message that he carries with him everywhere he goes and that's just so important."

Jackson's message is one of hope. 

Right now there is no cure for RCDP but you may see some advancements in the next few years.  "We have a doctor in Tennessee who is working at a research clinic and he's really hoping that some things are about to change as far as being able to pinpoint therapies that would help our children," explains Jackson's mom, Tracey Thomas.

Thomas says if that research helps just one family have more time with their son or daughter, it will all be worth it.

"We know God made him just the way he wanted him to use him and our family is so happy to be able to celebrate an occasion like tonight where we're trying to do something to help all the families that are facing what we are," said Thomas.

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