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Cora Jean's Primary Lymphedema Trip to Germany
About this campaign
The is the official fundraiser for miss Cora Jean.
Cora Jean was born with Primary Lymphedema at birth. It effects both arms, hands, and her entire lower body, this distribution and presentation is rarely seen. Unfortunatly it's been very difficult to find doctors and physicians educated and knowledgeable enough to help us in her unique case. We have been turned down by the Childrens Hospital of Philadelphia and Mayo Clinic here in Rochester, Minnesota has struggled to help us find any answers or help even after reaching out to other prestigious doctors and hospitals in the United States.
Coras Lymphedema hasn't been responding well to normal lymphedema treatments known here in the United States, due to little being known about this condition. Her hands (specifically her right) has continued to grow in size and she often struggles with grip and the weight from the fluid due to this. She's also been experiencing pain in her hands as well as other affected areas due to her swelling.
Recently, after several months of inquiries, painful tests, and follow up for little Cora. I was placed in connection with a world renowned clinic in Germany whom was willing to take on Coras rare case. This clinic The Földi Klinik in Hinterzarten, Germany is a leader in Primary Lymphedema Treament and even trained the founder of Klöse Training here in the United States. Which is a leader in the combination of MLD/CDT therapy for Lymphatic patients.
The Földi Klinik has resources, knowledge, and experience the United States is still yet to learn when it comes to diagnosing and treating Lymphedema.
Cora has been accepted into this clinic and we hope to raise funds to take her in August. Many may ask us "why not the United States" or the inquire about the Bostons Children's Hospital ( know some to be a place for treatment). We have chosen the Földi Clinic because we know they are the most knowledgeable and comprehensive clinic and treatment choice for Coras case. We also know that our insurance doesn't cover anything out of state for Cora, and surprisingly treatment and healthcare is cheaper than if we'd try going elsewhere even within the United States. Although, after two almost two years we haven't found anyone to take on or even spearhead her case.
These hopeful raised funds will help us get Cora to Germany for an entire month where they will perform an entire comprehensive and wholistic approach to Coras diagnosis and treatment as well as added knowledge and training for mommy to continue to treat her once we are back in the United States.
We need to supply payment a month before Coras projected trip (August).
We still strive to help raise awareness about Primary Lymphedema and we hope to afford this trip to continue on Coras life long journey with Primary Lymphedema.
If others would like to support in other ways we greatly appreciate sharing Coras Story!
She as well as other children ( even adults) in the United States are struggling to find adequate treatment and are constantly arriving at dead ends when it comes to answers to their questions. Supporting the National Lymphedema Treatment Act can be another amazing way to show your support for quality treatment and recognition by insurances.