When Jerie was fifty-six-years-old, she started having problems walking (dragging the right side of her body, extreme tremors in her hands, major gastro issues, falling, neuropathy in feet and hands). That December, she lost most of her hearing. She didnâ€™t know what was wrong with her. In mid-February 2013, Jerie had her first appointment with a neurologist. This produced nothing but more questions. Jerie was told that no one could diagnose her problem at that time. She continued to lose two to three pounds a week, until she weighed less than ninety-five pounds. Jerie was definitely deteriorating, but was determined to live. In April, Jerieâ€™s neurologist called and said that he had a diagnosis. MNGIE (mitochondrial neurogastrointestinal encephalomyopathy) is a result of each parent having a mutation in the TYMP gene. The condition is very rare, with less than 100 cases diagnosed in the world. There are no medications and no cures for this disease. Over time, Jerie has learned to walk with orthotic braces, or use a wheel chair or walker. She has not been able to return to work, due to mobility issues and a lack of strength. It was determined by medical personnel that she needed to take disability retirement. This has put a hardship on her family, since Jerie cannot adequately hear, drive a car or do many daily activities. A Cochlear implant was put in to help with hearing loss, but was later removed due to infection. Jerie is scheduled for a bone marrow transplant in April 2015. She is fortunate that a sister is a 100% match. The transplant will need to be done in New York at a hospital that has expertise with this disease. Unfortunately, Jerieâ€™s health insurance will not pay for travel and lodging. To support Jerieâ€™s transplant-related expenses, she and her family have decided to team up with The Bone Marrow Founation. Your contribution is very greatly appreciated!
The Bone Marrow Foundation relies 100% on private donations. Your generous Lifeline Fund donation will make a significant difference in the lives of patients like Jerie.