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Doctor Adopts Mission of Amber

Gives Oerding Family Hope With New Diagnosis

After a frightening couple weeks of not knowing the cause for Amber Oerding’s sudden and dramatic weight loss, the Oerding family has received some good news: Further diagnosis.

Amber suffers from Hashimoto’s Thyroiditis, a disease in which Amber’s immune system attacks her thyroid gland. The disease causes extreme pain that centers in her stomach and radiates throughout her body. But recently, her pain had gotten worse and she dropped to a scary 87 pounds.

She was taken to UC Davis Medical Center for 22 days while doctors and specialists hunted for answers. They brought in a geneticist to handle her case but when she took one look at Amber and saw her regression she said she "could not take care of our daughter," said Sharon Oerding.

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Ultimately, Amber was operated on to place a feeding tube into the second part of the small intestine.

“But when they operated on her she had nothing but complications including heart trouble,” said Sharon, who has been at her daughter’s bedside almost incessantly. “Because she had failure to thrive, she was in a critical state.”

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Amber was ambulanced to Lucile Packard Children’s Hospital at Stanford in Palo Alto. It is a hospital that leads in heart care, cancer, newborn care, and kidney, liver, heart, and lung transplants in the San Francisco Bay area and once there, they began thoroughly searching again for more answers.  

“It was very traumatizing,” Sharon said. “She almost died.”

The team of medical staff was able to stabilize the young woman who just graduated from Dixon High School.

Dr. Gregory Enns, who is considered a specialist in mitochondrial disorders, took Amber’s case. During the last two weeks of test after test, Amber is gaining weight and starting to do better. Dr. Enns was able to determine that Amber has a rare Mitochondrial Complex One Deficiency and he thinks he can help.

The condition is a rare genetic defect where an enzyme deficiency (NADH CoQ) disrupts cellular processes and causes various organic acid disorders. Any of a variety of the components of the enzyme may be missing or defective and hence the clinical presentation and severity may vary.

“She went in because she was losing weight and now we have a diagnosis,” said a relieved sounding Sharon who left her son and husband at home to run their household while she stays with Amber. “Dr. Enns started her on a ‘mito cocktail' of vitamins, nutritional supplements and enzymes,” she said.

“She’s doing much better and it is a step forward –baby steps—she has a long way to go," she said. "He doesn’t know what caused her DNA to mutate but he has ruled out the [fatal version] of this disorder. They thought she had that but she doesn’t otherwise she would already not made it. That one actually kills you within months. He doesn’t know how [the cocktail] will affect her but it has worked for others. He won’t give us a prognosis,” Sharon said.

Steve, Amber’s father, and Sharon know that what their daughter has is not curable and the medical team is working with Amber to cope with the disease.

"But Amber is sticking with high hopes,” said Sharon. “When they keep telling her there is no cure, she doesn’t want to accept it. The psychology people are trying to get involved and teach her how to deal with this. It is really sad." Amber says don’t write off Dr. Enns, though.

Dr. Enns says Amber is going to be in a study for three years with him.

“He’ll take all kinds of bits of her and study her at no cost to us,” said Sharon. “He cares so much—he’s passionate. He met Amber in February and his genetic team and called every single week until we got her here. The first time he met me, he hugged me and said ‘you are finally here,’ ” said Sharon.

The help from Dr. Enns will be extremely helpful to their family as their savings and funds have been wiped out even with their insurance coverage.

“The Ronald McDonald House has 56 families on the waiting list—we are 57,” said Sharon who sleeps in a small cot next to Amber each night. “Steve still has to work and we can’t afford for him to come every week. It takes so much money for eating and gas. I say my prayers every day and the doctor and the medical team has been wonderful,” she said.

The hospital staff gave the Oerdings a very special gift during this ordeal by treating the couple on their 24th wedding anniversary. They got them a “beautiful, very classy” hotel room after a champagne dinner at the hospital. Their son, Austin, came to the dinner with them, too. The hospital staff wrote a letter to their family saying how much they hope the couple’s daughter gets better.

Austin, who is going into junior high school, wrote Sharon a letter that she says she will always cherish.

It read, “Mom, thank you for all you’ve done for me that I never realized. Since you’re not here, I’ve actually seen all the things you do as a mother," Sharon said. Austin has "grown up so much" through his sister’s entire ordeal.

Right now Amber is doing much better and she’s doing physical therapy. She’s walking five to seven minutes with her mother but then has to go and sleep. It takes everything she has even for simple things--like brushing her hair, her mother said. Now she can sit up and she’s eating a little bit of food.

“It’s starting to turn around for her,” Sharon said with optimism. “They are studying her—who knows who’ll she’ll be able to save.”

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