Holly Marenic was born 6/12/96 and she died 5/8/17. Holly's story actually begins before 6/12/96. I had chicken pox
during my 15th week of pregnancy, giving Holly the chicken pox at 16 weeks gestation, during the time her brain stem was developing. The varicella virus attacked and damaged her brain stem and the Vagus nerve was damaged. This is important to know because we now know that trauma/damage to the Vagus nerve is one of the onsets of gastroparesis.
Holly suffered with GI issues her whole life, most of which were unexplainable. Sharp shooting pains, unable to tolerate her feedings, vomiting and nausea, constipation or diarrhea. She had emergency surgery Christmas Eve of 2003 for an interception. She was on TPN three different times due to her in tolerance of her feedings. The damage to Holly's Vagus nerve also caused issues with her ability to swallow. So the almost constant vomiting caused chronic aspiration pneumonias.
Over time her damaged lungs caused pulmonary hypertension, stressing her heart and on May 8th, 2017 a golden heart stopped beating. She weighed 44 pounds the day she left me, she was 20 years old.
Holly's story is important for others to hear. You see there is so much more to her story. Not only did she suffer pains that you & I can't imagine but try to imagine the pain she suffered and then imagine being told it was all in your head.
The doctors couldn't figure out the cause of her pain and nausea so to begin our horror story, a few doctors accused me of Munchausen by proxy. They couldn't figure it out so they accused me of harming MY child and I lost Holly. The state came in and took her from me.
Although she continued to get sick it still took two years to get her back. We changed doctors and finally
THEY listened. Now we knew there was something wrong, we knew she had poor GI motility, slow emptying is what they called it. We still didn't know why or how to treat her.
She was never given anything that helped with her pain or nausea. Gaining the money needed to research this disease is important to me.
No one should have to go through life the way my child did. If this research will help others live a better life, it would give Holly's life a little more meaning.