Since I was born, my life has been far from ordinary. I was born with a rare genetic metabolic disorder called Maple Syrup Urine Disease (MSUD). This means that I was born without the enzymes to break down protein, resulting in a toxic buildup of their byproducts which can lead to severe brain damage and even death; therefore I had to follow a severely restricted, low protein diet. Ten years ago I was the seventh MSUD patient to receive a liver transplant, which cured the MSUD as a new liver is able to break down the protein and there is no longer a threat of brain damage; the transplant saved my life!
Once I moved to Indianapolis, I transferred my post liver-transplant care from the Children’s Hospital of Pittsburgh to Indiana University Health (IU Health) who has one of the best transplant programs in the country. I recently started a job at St Vincent Hospice – this job offered me a better work/life balance which is necessary when you have a fiance, are planning a wedding, and trying to build a life together. St Vincent Hospice is part a large hospital system that is a competitor to IU Health; that said, my insurance does not cover my liver doctor or the medications he prescribes, tests he orders, or appointments he schedules – as he is considered to be out of network.
While I am doing my part to figure out a long term solution for this very serious problem, I am in need of some short term help to get me through this year to be able to afford my continuous anti-rejection medication, blood draws, and other medical costs related to maintaining a transplant. Transplant was a gift that I received, but the ongoing annual costs are high and not always easy to meet.
My family and I started this transplant fund through Help Hope Live prior to my transplant to help with the bills not covered by insurance. Help Hope Live provides both tax-deductibility to the full extent allowed by law and fiscal accountability any contributors. This reassures contributors that the funds are used appropriately – to pay or reimburse medically-related expenses.
To make a contribution, you can click the “Donate Now” button on the left. Feel free to help spread the word about this campaign via the “Share My Page” options at the top right side of this page.
I genuinely appreciate all the love, support and prayers!
Sincerely, Jenna
For more information, please contact Help Hope Live at 800-642-8399
