Kasey Rubin was relieved when her toddler daughter Cora Jean could finally verbalize a few words.

“She’ll say, ‘Ow, ow,’” and then I know she’s feeling some pain,” said Kasey. As an infant, it was hard to tell if the girl was in pain or if there was another problem.

Her pain is real. Cora, 2, has a rare, chronic and incurable disease called primary lymphedema. The genetic disease causes painful swelling of her hands, arms and lower body. Kasey said the vibrant little girl with the cute top knot has had the condition since birth.

Both of Cora’s hands – especially her right hand – are swollen and her lower extremities somewhat less.

“It is a disease that most often is seen in cancer patients” who have had lymph nodes removed, Kasey said.

While U.S. clinics and hospitals know the condition, treating a tough case like this seems out of their realm.

Cora was delivered at 28 weeks by C-section just over two years ago. She was taken early, since tests indicated that she was low on fluids. Her condition was quickly diagnosed.

There are times when infants born with the condition will have the swelling go down in a few days or weeks. But Cora Jean’s only got worse. Wrapping extremities can also be effective, but not always. After trying several times, Kasey noticed that “The swelling of Cora’s right hand was getting worse.”

Those who are not educated in what lymphedema is are often shocked from the appearance of Cora’s hands.

“I’ve had a mother run to me and ask if I had rubber bands around her wrists,’ she said. “Or some will get mad that she is near their children, because they believe she is contagious.

“I try to handle as much as I can with as much grace as possible,” Kasey said. “I try to educate people instead of getting angry” and try to be a good role model for her daughter.

For the most part, she said, Cora “is a happy kid … and she is tough.”

There are also drug therapies that can be used, but Kasey said the side effects were severe “on 40-year-olds; I can’t imagine how they would effect Cora.”

In November, the Rubins – which includes husband Brett, a Minnesota Department of Transportation worker – met with Guenter Klose, an instructor in complete decongestive therapy who trained at the Foldi Clinic, a specialist clinic in Hinterzarten, Germany.

“He told us that complete decongestive therapy helps reduce swelling through a number of procedures.

“They would like to see her there the entire month of August,” said Kasey.

That takes a lot of money. Friends and family right now are planning a fundraiser and silent auction in early June; more information will be released in May. The family also has a Facebook page, under the name, “Little Lymphie: Cora Jeans Story.”

There is also a youcaring.com page (which leads you do Go Fund me page), https://www.youcaring.com/corajeanrubin-1129095

“Even sharing our story” is a way of helping, said Kasey.