Tonya Westmoreland that has rare disease.
Hi, I felt led to start a go fund me to help my precious friend and her family with travel/medical expenses. Please find it in your heart to help them with a monetary donation or by calling Tonya’s name in prayer. Below explains a little about Tonya’s life since she was 13 to present.
Tonya Westmoreland was diagnosed with von-Hippel-Lindau (VHL)
at the age of 13. VHL is a rare genetic disorder that causes various tumors throughout the body including but not limited to, the brain, spine, eyes, kidneys and pancreas. These tumors are caused by a flaw in a single gene - the VHL gene. Because of the many different manifestations of this disease, it is impossible to predict how it will present or progress in a particular person and this means regular surveillance is critical to someone living with VHL. Unfortunately, due to the rarity of the disease, knowledge is limited and patients often have to travel great distances to receive the necessary testing and care. Over the last 41 years, Tonya has had 6 brain surgeries, 1 pancreas surgery, 3 major eye surgeries and dozens of laser eye surgeries. She lost sight in one eye and hearing in one ear in her early teenage years as a result of her tumors.
Her last major surgery was in 2012 in Bethesda, MD at the National Institutes of Health, where they removed a tumor from her pancreas and she has been stable ever since until recently. Tonya began having extreme swelling in her lower extremities in late August 2022. She also noticed her blood sugar was trending upward.
She began a low sodium, low sugar diet expecting results, but there were none. In mid- September 2022, Tonya and her husband, Eddie traveled to NIH for her annual medical tests. Upon returning home, she was admitted to the hospital due to extreme leg weakness, high blood sugar and concerning lab results. She has since been sent home on insulin and has limited mobility, requiring assistance 24/7. NIH called Tonya on 9/27/22 with the results from her tests 2 weeks prior.
The tests showed a 4.2 cm mass on the head of the pancreas that had metastasized to the liver, which is now completely covered in lesions and is considered inoperable. Due to the extremely fast rate of growth of these tumors, it is imperative that Tonya have a biopsy done immediately to determine what treatment options are available. This is a costly and unexpected expense for Tonya and her family, as well as travel to NIH and the care she will need after the biopsy that will be provided closer to home for her comfort and convenience of being near her family. Any and all help is greatly appreciated and if you would like to learn more about VHL, please visit WWW.VHL.ORG.
