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     April 20, 2018      #52-109 PB1

Rose Creek family seeks treatment overseas

Anne Halliwell

Kasey Rubin, of Rose Creek, is looking overseas for treatment for a painful genetic disorder.

As soon as her daughter Cora Jean was born, Rubin said she noticed swelling in her newborn’s hands and lower body.

“If you don’t know what you’re looking for, if you’re not an over-paranoid mom, you probably wouldn’t think it was anything,” she said.

The doctors reassured her that swelling was within the bounds of normalcy. But when it didn’t abate, they — and Rubin — knew something was wrong.

Cora Jean was diagnosed with congenital lymphadema, a genetic disorder that affects the lymphatic system, which filters lymph and blood throughout the body.

In people with lymphadema, those fluids collect in various parts of the body due to obstructions or malformation of the lymphatic vessels. This leads to swelling and pain.

The condition is present in both of Cora Jean’s arms and hands, and her entire lower body from the stomach down.

Congenital lymphedema is usually a hereditary condition. Rubin doesn’t know whether a member of the family carries the gene for the condition, or whether Cora Jean is the first one with the genetic disorder.

Post-diagnosis, the Rubins put off moving back to Wisconsin. They stayed in Rose Creek and pursued the usual treatments to reduce the pain and swelling.

They tried compression garments, bandages, and massages to try to move the trapped fluid elsewhere.

When Cora Jean celebrated her second birthday, on April 4, her hands were too swollen to wear costume jewelry.

None of the usual treatments have worked — even the lymphatic therapists at Mayo Clinic in Rochester have been unable to reduce the amount of fluid in Cora Jean’s right hand, where it tends to collect.

Which is why Kasey Rubin has set her sights across the sea.

The Földi Clinic in Germany specializes in lymphology.

To that end, she’s trying to raise $20,000 for treatment by July — the payment is due a month before Cora Jean is due to arrive at the clinic, in August.

The money should cover two months of treatment at the Földi Clinic, Rubin said. As the Rubins’ insurance doesn’t cover any out-of-state treatments, that much cash would barely cover a few days’ worth of examinations and treatment at a children’s hospital in Boston or Philadelphia.

The Rubins have a YouCaring page to raise the funds, as well as a Facebook page that updates its followers on Cora Jean’s progress.

The doctors at the Földi Clinic are hopeful, Rubin said. They already have hypotheses about what may be complicating Cora Jean’s treatment, although nothing can be said for certain until she’s seen.

Rubin is also an advocate for her daughter and other patients with lymphedema, both in and out of the hospital.

“It’s still so unheard-of,” she said. “I really had to push for treatment before age 2. But it’s only gotten worse since she was born — if we hadn’t gotten that treatment, it would have gotten worse.”

The condition is also noticeable in public. Rubin has explained to concerned parents in grocery stores that no, her daughter has not cut off her own circulation, and no, her daughter will not pass her illness to other children at playgrounds. She carries informational pamphlets and passes them out to those who are less-educated about lymphadema.

Cora Jean is still very active — she bounces on a trampoline, swims, and does gymnastics, which all help promote fluid circulation. Rubin does have to be careful — a small poke or cut could easily lead to an infection in an affected part of Cora Jean’s body.

“She’s had this since she was born, so she doesn’t know the difference,” Rubin said.

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Anne Halliwell