Mother’s crusade aims to bring about change

Oct. 30, 2013 @ 11:28 PM

Most people know that Breast Cancer Awareness month is during October, but not as many know it is also Dwarfism Awareness Month.

Patti Kerley wants to change that.

Since her daughter Danika was born little over a year ago, the Vance County native has launched a personal crusade to raise awareness and minimize the stigma associated with the condition of short stature.

Little People of America, the dwarfism advocacy group, defines dwarfism as an adult height of 4-feet 10-inches or under. The average height of an adult with dwarfism is 4-feet.

When strangers meet Kerley’s 16-month-old daughter, they are often visibly puzzled by her size.

“I get the confused look and that’s when I explain that she has dwarfism,” Kerley said.

Kerley recalls one person who hadn’t heard the terms ‘dwarfism’ or ‘little person’ before.

After Kerley described her daughter’s condition, the person exclaimed, “Oh, like a midget.”

In Kerley’s household, “midget” is known as the M-word.

She always says ‘little people.’

Danika has achondroplasia, the most common form of dwarfism, that occurs in about one out of 26,000 to 40,000 babies nationally.

Babies born with achondroplasia usually have a large head and prominent forehead, as well as curvature in the lower spine.

Kelly Benson, Danika’s physical therapist, said dwarfism is not typically related to neurological or cognitive delays.

But motor skills may require more time to fully develop.

“As long as the child doesn’t have any medical complications, they will be able to do everything an average child does, it will just take longer,” Benson said.

There are 17 states that recognize October as Dwarfism Awareness Month but North Carolina isn’t one of them.

Kerley said greater awareness for dwarfism might encourage expectant mothers to receive the type of ultrasound that detects dwarfism.

Doctors did not identify Danika’s condition until four hours after she was born.

“I would have loved to know beforehand, so I could have been more prepared,” Kerley said.

Dr. James Wayne, a pediatrician at N.C. Pediatric Associates, said the condition can go undetected during pregnancy.

“It is easily overlooked because if there are no other complications with the pregnancy then there is no reason to do the more detailed ultrasound,” he said.

He said dwarfism does run in the family, but most cases are spontaneous mutations where there is no family history.

Kerley said she was devastated when she learned of Danika’s condition.

“I was upset, but it wasn’t long after that I realized I have her for a reason,” she said.

The Little People of America’s local branch has provided much needed support, Kerley said.

“I’ve gained a whole new family,” she said.

Benson said it is extremely important for families who have a child born with dwarfism to establish a support network.

“Not just making sure their medical needs are taken care, but also emotional needs to remind them they are not alone,” Benson said.

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