Jerie was born in Missouri in 1956. She has three older sisters and two deceased infant brothers. Jerie attended the University of Missouri and graduated with a degree in Dietetics. During college, she married her high school sweetheart, Anthony, and after their graduation, they moved to Texas. For twenty years, Jerie worked as a dietitian at various facilities in the Dallas-Fort Worth area and for fifteen years, she taught family consumer courses in junior high and high school. Jerie was fortunate to have two healthy beautiful daughters and felt it was a joy to raise the girls and be involved in all of their activities. She felt that life was great and rewarding; until she found out that she had a terminal illness.
When Jerie was 56 years old, she started having problems walking – dragging the right side of her body, extreme tremors in her hands, major gastro issues, falling, and neuropathy in feet and hands. That December, she lost most of her hearing. She didn’t know what was wrong with her. Jerie’s family doctor felt that she was having major neurological problems and ordered tests including MRIs and other radiology procedures.
In mid-February 2013, Jerie had her first appointment with a neurologist and had numerous tests taken and blood work drawn. All of this produced nothing but more questions. At that time, she was scheduled for a brain biopsy, and IV steroids. Two days later, another MRI was done, and it showed no improvement. Jerie was told that no one could diagnose her problem at that time. The next procedures included an EMG and a nerve muscle biopsy. She continued to lose two to three pounds a week, until she weighed less than 95 pounds. Jerie was definitely deteriorating, but was determined to live since their first grandchild was to be born in September.
In April, Jerie’s neurologist called and said that he had a diagnosis. The name of the disease she was diagnosed with is MNGIE (mitochondrial neurogastrointestinal encephalomyopathy). This disease is a result of each parent having a mutation in the TYMP gene. Jerie’s had stayed dormant in her body and none of the physicians have any idea why. The condition is very rare, with less than 100 cases diagnosed in the world. Since Jerie’s body does not convert amino acids to proteins, she lacks energy in all of her cells in the body. Because of the level of thymine her body, it is destroying Jerie’s nervous system. There are no medications and no cures for this disease. At that time, she was started on an amino acid/vitamin regime.
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. To help with the hearing loss, a Cochlear implant was put in, 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, Jerie’s health insurance will not pay for travel and lodging. This will definitely be a hardship for Jerie’s family. This procedure is not a cure, but it will slow the progression of the disease. To support Jerie’s transplant-related expenses, she and her family have decided to team up with The Bone Marrow Foundation. Your contribution is very greatly appreciated!
Or you can send a check, payable to The Bone Marrow Foundation.
Be sure to include Jerie’s name on the front of the check.
Send check to:
The Bone Marrow Foundation
515 Madison Avenue, Suite 1130
New York, New York 10022