Sharon Oerding

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I am the mother to a mitochondrial angel. Her name was Amber Elizabeth Oerding. Amber passed away at age at 23 on Christmas Eve, 2016. Sadly, our daughters’ medical case was not understood by all her physicians. Amber progressed very quickly from the mitochondrial disease that was not understood until the last few months of her life. Amber had mitochondrial myopathy. As her parents, we continued to ask Amber’s doctors for help. The hospital at the time did so many tests as they also continued to watch Amber decline and still had no answers for us why this was happening to our daughter. She was seen by one of the top mitochondrial disease specialists and all he knew was to give her the mito cocktail with hope this would help Amber. But, our Amber only continued to decline and vomit more. It seemed as if she would use all her energy up in a very short time and always needed to rest. We watched our daughter slowly waste away and nothing could be done. When we took her to one of the doctors asking for help they did not understand. Amber just wanted them to send her help at home with nurses as she was so sick and I as her mother was so very tired.  She began to not have trust in her physicians as they just were not understanding what was happening to her body. She asked over and over for comfort care which was not given to her. Her medical case became that the hospital decided it was only in her mind she was not really sick. I, as her mother was accused of Munchhausen by proxy.

When the hospital and her physicians realized that Amber was truly was badly sick they finally sent her back to see her mitochondrial specialist by that time three years had gone by. Amber would see him again with us as a family. I remember that day he kept saying he was so sorry no one told him how bad she was. He then he started paperwork for her to be with UDN, but by the time they had her medical case and most records. It was too late for Amber as she was done with hospitals and doctors.  I remember she was so tired. When we took her back to see her physicians once again they had no understanding what was happening to Amber. Our daughter would beg for help and to please let a nurse come to our home and help me, I can’t do this anymore. September, 2016 was the month that Amber would receive a nasty letter from the hospital stating that unless she agreed to surgery and her parents to not be with her at any doctor appointments she would be kicked out of the hospital. At this stage I made some calls to her mitochondrial doctor and he still couldn’t believe they were doing this to his patient. We made an online complaint to the state of California on her physicians and hospital but not her mitochondrial doctor. The state then decided to send a nurse practitioner to look our Amber over that same day. October 13th, 2016 she was placed in hospice care with a very loving caring nurse that would oversee her care until the day she passed away at home with her brother, father and her best friends.

Since Amber passed away I have received grief counseling. It took me many years to trust doctors again, but I agreed to continue the testing that was never finished for Amber. As her mother they were able to use my blood and check my DNA. I came back with two gene variants, but no known mutations.  The neuromuscular scientist shared just because these tests are negative does not mean that you do not have a mitochondrial disorder and more testing was done. This time they found I had issues with my mitochondria. I am now potentially diagnosed with a mitochondrial metabolism disorder. Because Amber had had a muscle biopsy done and the hospital still has this for study, I myself will have a muscle biopsy done soon and they can study both Ambers muscle and my muscle together. My hope is after my signed agreement the teaching hospital will take care of me and they will learn from all that went wrong with our daughter’s medical care and we can do this in Amber’s honor.

It’s not going to be easy for me as a patient as I need some surgery that could be dangerous for me, but somehow, I feel I got this as I have my angel Amber beside me and she will hold my hand through them. She was our gift from God now we both know she’s in gods care until someday we are all together again as a family.