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Toddler battles rare genetic disorder that swells hands, arms, lower body

Cora Jean's hands, arms, and entire lower body are often painfully swollen and filled with fluids.

Posted: Apr. 29, 2018 10:22 PM
Updated: Apr. 30, 2018 6:42 AM

ROSE CREEK, Minn. - It's news that no parent ever wants to hear, that their child has a rare and incurable disorder. For a Rose Creek family it is reality.

The Rubin family has spent the better part of two years learning about a disorder that only affects two percent of the population. Now, they are looking at a medical facility in Germany, which offers special treatment for the rare condition. The trip is set to cost $20,000 and they could use your help to make it possible.

Brett and Kasey Rubin's daughter, Cora Jean, was diagnosed with a genetic disorder at birth: Primary Lymphedema. The condition caused their toddler's lymph nodes to form abnormally. Cora Jean's hands, arms, and entire lower body are often painfully swollen and filled with fluids.

Since 2016, the family has made countless trips to Mayo Clinic and Olmsted Medical in hopes of helping Cora Jean, but the family said nothing has worked.

"Normal treatment for it would be wrapping and compression and massages. We have about three bags full of supplies for that right now and none of that works," explained Cora's mom, Kasey Rubin.

The family has since been in contact with a medical facility, The Földi Klinik in Hinterzarten Germany, which specializes in treating genetic disorders like Primary Lymphedema. Their hope is for doctors in Germany to offer a long-term solution to treat Cora's disorder.

The trip will cost $20,000 for the family of three. Rubin said the medical facility will not allow them to book plane tickets, nor can they receive an itinerary, until they have the money in hand.

If you would like to donate to the family there is an account set up for Cora Jean Rubin at United Farmers State Bank of Rose Creek, MN.
A benefit is set for the beginning of June, details are still being finalized.

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