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5-Year-Old Folkston Boy with Rare Disease Will Revert to Infancy

5:15 PM, Dec 22, 2010   |    comments
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FOLKSTON, Ga. -- A 5-year-old boy in Southern Georgia has a rare incurable genetic disorder.  His mother said it will make him revert to infancy and then he'll die.  The process has already begun.

The Luder family is ready for Christmas, but this holiday is a painful one.  Their son, Dalton Luder, was recently diagnosed with Adrenoleukodystrophy, also known as ALD.

His mother, Tivey Luder, had never heard of it until three months ago, when her son's doctor gave her the diagnosis.

"I was like, 'Okay, what do we do now?' She said, 'Well my best advice to you now is take him home and love him, keep him happy and enjoy what time you have with him.' I just fell to the floor screaming," she recalls.

Shortly after that day her son's behavior began to change.  He started sleeping more and was having problems with his vision.

She said her active independent kindergartner was fading away.

Now, the once vivacious young boy sleeps most of the day and a recent doctor visit shows he is now legally blind.  His mom said she doesn't know what to expect from one day to another.

"Every day is different. Every day he loses a little more," she said, rubbing her son's back.

According to medical experts, ALD affects about one in every 20,000 people.  The worst cases are in children.  It causes a loss in vision, speech and mobility. 

"He'll go back into infancy and then he'll forget me. He'll forget everything and he'll go into a vegetative state and then into a coma and then he'll slip away and I have to sit there and watch that," said the 5-year-old's grieving mother.

The family said through this difficult time, their Folkston community has been their bright light.  They said strangers stop by daily to drop off money, food and toys.  Folkston and surrounding communities have also held multiple fundraisers to allow them to stay home from work.

The Luders don't know how much more time they have with their son, but they said they have always been extra appreciative for their time together.  They said that's partially because they didn't think they could have children.  They call their son their miracle child.

If you'd like to help them, there is an account set up at First National Bank. The account in Dalton's name is 6655284.

First Coast News

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