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Naperville rallies around young boy with rare brain disorder

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This Naperville community has rallied around a family in need. (WLS)

A Naperville community has rallied around a family in need.

Neighborhood kids have set up multiple lemonade stands to raise money for Answer 4 Alec.

The organization benefits little Alec Jump, who suffers from a debilitating genetic brain disorder called Leukodystrophy.

"Electrical impulses aren't able to travel correctly in the brain to go out through the rest of the body," explains Keely Haag from the United Leukodystrophy Foundation.

This manifests itself through abnormalities in the myelin (also known as white matter) sheath, which is supposed to insulate the nerves' axons, according the United Leukodystrophy Foundation.

As a result Alec, who is almost two years old, is developmentally delayed and cross-eyed. But his parents Kyle and Julie Jump don't know his full diagnosis yet.

Jessica Nicoll, a genetic counselor at Lurie Children's Hospital, says there are more than two dozen known forms of Leukodystrophy.

Her team treats baby Alec. While they were able to see the brain's white matter abnormalities on a MRI, more testing is required to pinpoint Jump's form of Leukodystrophy

"There's not much we can do right now. It's a lot of therapies and trying to find something," said Kyle Jump bluntly.

They're hoping for specifics soon, but need financial support to pay for testing that insurance won't cover.

Bills will keep piling up since most treatment focuses on quality of life, not a cure.

That's where Naperville has made a difference.

"Random strangers coming by and saying 'we're sorry to hear, but how can we help,'" recalls Julie Jump.

Friends old and new have made donations and helped spread the word about Leukodystrophy.

Despite the agonizing situation, adorable Alec Jump brings joy to those around him.

"...He's the happiest smiling baby. That's what keeps our hope up and keeps us going," adds his mom.

The Jumps are looking for a cure to save their son but also want to raise awareness about Leukodystrophy so other families won't have so many unknowns in years to come.

On October 19, Answer 4 Alec hosts a benefit gala. You can buy tickets and make a donation to the organization here: www.answer4alec.com.

Related Topics:
community-eventsfundraiserdonationsillnessNaperville
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