Warner Robins Family With Two Special Needs Children; Looking for Neighborhood Support

When Elisabeth Davies was born five years ago, she was a healthy baby girl with no medical problems.

Her brother Eddie was born a year later, his medical conditions, were unlike anything doctors have seen before.

“The doctors said he had features that were different, and they wanted to go ahead and do genetic testing on him,” mother Carolina Davies said.

Eddie has something called Alfie’s Syndrome, which means there is a deletion in his Number Nine chromosome.

“He has missing genetic material…at the age of four, he’s at about the level of a 12 month old,” Carolina explains.

Also known as ‘9P Minus’, Eddie is a very loving, active four year old, who cannot walk or talk. But that doesn’t mean he can’t get around or let you know what he wants.

Carolina says he knows exactly what the word ‘No’ means, and he loves to meet new people.

But 9P Minus is a very rare disease. In fact, there are only about 250 people in the world with the condition. And very few doctors who know anything about it.

Eddie also has a condition known as 8Q Duplication. In Eddie’s case, this means his eighth chromosome has duplicated itself three times. This condition is so rare, there are no books or literature about the duplication. Carolina says, they haven’t been able to find anyone else in the world yet who has this same condition as Eddie.

But then, life threw another curveball at the Davies. Eddie’s older sister Elisabeth, was diagnosed with diabetes when she was two years old. She is now a Type 1 diabetic.

“It can be crazy, it can be stressful,” Carolina admits.

And most recently, Eddie began to have seizures. Elisabeth can pass out if her blood sugar is too low, and mom, wants a helping hand…or four.

Carolina says she and her husband wanted to get a service dog for both of their children when Eddie began to have seizures. The dog is trained by an organization called ‘4 Paws for Ability’, so it can alert parents when something is not right with their children.

“It’ll be a dog that detects seizures, does behavior disruption, because you have a lot of movements. So the dog will be there to calm him (Eddie) down,” Carolina says. 

But to get a dog will cost the Davies $13,000 to train. Money Carolina says, is more than worth fighting to find.

There are a few opportunities to help the Davies family to raise the money to get the specially trained dog. If you would like to help, there is a bake sale at the Galleria Mall in Warner Robins on August 13th at 12:30. Also, you can buy a raffle ticket from Oak Ridge Custom Finishing for a chance to win a gun.

To find more information about Eddie, Elisabeth, and the rest of the Davies family, you can read Eddie’s Blog.

Categories: Local News

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