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Mom shares infant daughter’s story for Dwarfism Awareness Day

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CHIPPEWA FALLS (WQOW) -- Oct. 25 is Dwarfism Awareness Day, and one local mother is hoping her daughter's story will educate the community and connect her with others living with dwarfism.

"Eighty percent of kids that are born with achondroplasia are born to average height parents," Chippewa Falls resident Hannah Patterson said.

Patterson's daughter, Marlee, is the only person in their family who has dwarfism.

"I could tell [she had it] as soon as they laid her on me," Patterson said.

After giving birth and studying up on her daughter's diagnosis, Patterson knew Marlee was going to need some special care.

"They just told me the basic information and we left there, and I needed more. They were like, 'okay see you in six months,' and I'm was like, 'I don't feel okay with that'," she said.

Following her mother's intuition, Patterson took her daughter in for further testing.

"We did a full sleep study, an MRI because, with achondroplasia, the hole at the base of your skull can be smaller. So they wanted to check to make sure there's no central sleep apnea because it can pinch the spinal cord," she said.

Just four days later, on Valentine's Day, the then 8-week-old had surgery to correct the issue.

"It was scary to go through," Patterson said about the surgery.

She has been able to connect with dwarfism resources in Southern Wisconsin, but she would like to see more local options.

"It was scary and frustrating," she said. "I joined a bunch of Facebook groups, but it wasn't the same as having someone more local because everyone is all over the country."

She wants these resources, not just for herself, but to educate the community her little girl is growing up in.

"I just want to be able to have conversations, learn and maybe bounce ideas off each other, and see how and where it goes from there. I want to be able to help future parents if they have children that are born with dwarfism. I want to be able to help them advocate and educate and just make them aware that it's okay," she said.

For dwarfism resources, visit Little People of America at www.lpaonline.org.

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Stephanie Rodriguez

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