A southeastern Minnesota family is turning to treatment overseas for a 2-year-old girl diagnosed with a genetic disorder that affects the lymphatic system and causes swelling and pain.
Cora Jean Rubin was diagnosed with congenital lymphedema, which affects how lymph and blood are filtered throughout the body, the Post Bulletin reported.
Fluids have collected in her arms, hands and the lower part of her body because of obstructions or a malformation of the lymphatic vessels.
“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,” said Kasey Rubin, Cora Jean’s mother.
The family has tried compression garments, bandages, and massages to move the fluid elsewhere, but the methods didn’t work. Lymphatic therapists at the Mayo Clinic in Rochester also were unable to reduce the fluid.
“It’s still so unheard-of,” Rubin 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.”
Rubin is now seeking help from the Foldi Clinic in Germany, which specializes in lymphology. Doctors are optimistic and already have theories for what may be complicating Cora Jean’s treatment, but an official diagnosis won’t be able to be made until she arrives at the clinic, Rubin said.
The family is trying to raise $20,000 for treatment by July. Cora Jean is scheduled to begin treatment in August. The funds will cover two months of treatment, Rubin said.
Cora Jean is still active despite the condition, Rubin said. She plays on a trampoline, swims and does gymnastics, which all help fluid circulation. The toddler does have to be careful because a small cut or injury could lead to an infection, Rubin said.