Family of girl with rare growth irregularity faces tough challenges

Doctors warned Joni Gatlin that something on the ultrasound didn't look right — there were some fluids that were out of place. They told Joni to prepare herself for a child with a congenital disease, but she never imagined anything like this.

Little Madison was born with a deformed torso and her upper body was completely out of proportion to her lower body. After months of testing, doctors diagnosed her with CLOVES syndrome, which affects the fluids under the arms and chest and causes them to grow much larger than normal.

Now, at 18 months, the extra mass she has accumulated under her arms weighs five pounds and will continue to grow proportionally with her height and weight. It is a very rare condition (it is estimated that only about 150 people in the world have it) which means that most people have never seen these symptoms before and stare at the poor girl when she is out with her parents.

Joni says that not everyone reacts the same: "Elderly people, they have sympathetic points of view on how bad they feel about her and us. A younger crowd, about my husband's and my age, they're a little more cruel. And kids are blunt."

Once, when two children asked Joni what was wrong with Madison, she decided to answer their question lightheartedly. She explained that there was nothing wrong with Madison, the only reason she looked that way was because her father was the Incredible Hulk. From that point on, Madison's nickname has been "Baby Hulk." It's good to see that the family is able to deal with their situation with a sense of humor.

Madison's condition requires constant treatment and therapy, which has put a financial strain on the family. They have started a GoFundMe campaign to help them deal with the mounting medical costs. Their goal is to provide a caring, loving home for their special daughter. And the way it looks so far, they're doing a good job of it.

Source:

littlethings

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