For the past ten years, I (Russell) have watched my wife Katherine battle a rare genetic disorder. It has affected her connective tissues, her autonomic nervous system, and multiple organ systems in her body.
Despite her doctor's best efforts, Katherine's condition has deteriorated. Last year, she was diagnosed with intestinal failure. Since September of last year, her only source of nutrition and fluid has been through a central line to her heart. She has also continued to receive bimonthly infusions of immunoglobulin that help to keep her disease from progressing further. Katherine is currently being treated by some of the best gastrointestinal doctors in the world, and has been recommended for intestinal transplant.
Though we are thankful for these life-saving interventions, they present a constant risk of complications. She has had multiple hospitalizations over the past few months, and had three central lines replaced due to infection.
As Katherine’s illness has progressed, she has lost the ability to drive, and struggles to complete many simple daily tasks on her own. Our 11-year old has also begun to show symptoms of the same disease, and has lost the ability to walk. Out of necessity, I have become a full-time caretaker for our family. This has been very difficult for us financially.
Katherine’s IVig treatments are $12,000.00 per month. Her TPN is $6,500.00 per month. Her IV fluids are $2,700.00 per month. The transplant her physicians have recommended would cost $2 million dollars. Medicare/Medicaid won’t approve many of the treatments Katherine’s doctors have prescribed for her. When they do approve treatments, they only pay a fraction of the cost, which would leave us owing hundreds of thousands of dollars.
A private health plan would cover the majority of these expenses, but the monthly premiums for a plan like this are upwards of $2000.00 per month. In order for Katherine to be listed for transplant, we will have to obtain one of these plans. Katherine's transplant team has advised us to start fundraising for those expenses not covered by insurance. These funds will help us cover deductibles, the cost of traveling to and from D.C. for appointments, housing near the hospital during her 6-month recovery, and living expenses while I serve as her full-time caretaker.
We thank you for your help and kindness. If you can't help us financially, please also consider praying for Katherine’s doctors to have wisdom, and that our two children would be comforted as they deal with so many challenging situations.
— Russell Berger
- Elizabeth Nieves
- Janet Hughes
- ANN WATKINS