Bastrop Family Faces Crippling Disease - KNOE 8 News; KNOE-TV; KNOE.com |

Bastrop Family Faces Crippling Disease

Posted: Updated: Dec 4, 2012 08:01 AM

BASTROP, La (KNOE 8 News) - It's common for children to break a bone or two, but not dozens in a year.

For one family in the ArkLaMiss that's a daily struggle for five of its six members.

Leigh Ann Jones and her four children have Ehlers-Danlos syndrome, a disorder that makes their bones severely brittle and affects their connective tissue.

She and her four children are in and out of the hospital nearly every week. It's tough, but Leigh Ann finds most of her strength in her faith, especially the verse  Romans 8:18, and the promise someday she and her children will be healed.

From an outsider's perspective, her four children look perfectly normal. But everyday activities, like going outside can be dangerous for them.

 "No sports, no heavy lifting because they can have artery ruptures, they bruise easily and they have very stretchy skin," said Leigh Ann, when talking about her children's health.

Her daughter, Alyssa, says their health struggles are a constant reminder that they are different from other children.

"We're very different from them. We can't do a lot of things like they can," she said.

Madison, the Jones' youngest child  has broken 27 bones in two years and could need ankle replacement surgery in just a few years.

"We're constantly dealing with crutches, casts and wheelchairs and splints. Madison is the strongest kid ever. There's times that she's broken bones and she wouldn't shed a tear. They don't like people to see them cry but they do go to their rooms and shed a lot of tears because they are in a lot of pain," said Leigh Ann.

But the hurt goes deeper than broken bones. People who are unfamiliar with EDS are often quick to judge the family.

"People say we do things to feel sorry for ourselves or that Madison breaks on purpose. They just make ugly remarks a lot. Not just kids adults too," said Leigh Ann.

The Jones' now home school their children after Child Protective Services was called to their home.

Leigh Ann spent more than 16 hours in court, fighting truancy battles for her children.

"They were physically unable to go to school. They break and dislocate and get sick so often, and sometimes it's even just hard for them to get out of bed. Plus, once they are sick it is so hard for them to heal. It takes them a lot longer than the average person," said Leigh Ann.

She's determined to have the girls live a normal life.

"I love them so much and I hate to see them hurt so bad. Everyday makes you stronger. The world is a tough place, so I tell them to smile and make the best of what they have.

And in the process they're learning to accept themselves and their illness more everyday.

" I love the way I am," says Alyssa.

The girls will be participating in the Little Angels pageant this weekend in Bastrop. It's a pageant that actually will benefit the family, with goals of spreading awareness about EDS. People who attend the event will not only enjoy a pageant but also will hear from local health officials about what life with EDS is like.

The pageant will happen this weekend at 2PM in Bastrop.

More info about the pageant:
www.littleangelsofnela.com/little-angels-christmas-pageant-rules-2012.html

More info about EDS:
www.ednf.org/index.php?option=com_content&task=view&id=2202&Itemid=88889278

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