Amber Soldiers On

A call comes through Solano's dispatch center in early January and the is summoned to a home in north Dixon.

If the address of the home sounds familiar to the Dixon firefighters, it’s because it is. It’s the home of Amber Oerding, a 19-year-old graduate who is battling a debilitating disease that’s brought her life to a standstill.

“The Dixon Fire Department knows our family now,” says Sharon Oerding, Amber’s mother. “They are very wonderful. They come to our home and they know now (about Amber).”

They stabilize Amber and an ambulance transports her to a Davis hospital, where doctors hook her up to an IV and administer medicine. With magnesium and hydrating fluids flowing through Amber’s veins, Amber's pain subsides. It was her birthday.

A day that began with mirth for Amber turned into another trip to the hospital for the girl who’s been in and out of them since birth. She’s underwent countless tests and has become somewhat of a medical mystery for a team of doctors who are working feverishly to find out what’s wrong with her.

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 aside from that, something is causing her pain to intensify.

Since Dixon Patch , she’s gotten progressively worse. She must now walk with the help of a walker or support from her mother, and must ride in a wheelchair for any serious traveling. The disease has bed-ridden her, her mother said, and has sidelined her plans to go to college and become a teacher who works with children with special needs.

On Amber’s birthday, January 5, many of her friends were home in Dixon for winter break and visited Amber. They shared stories with her about their new college lives, and gave the birthday girl a sense of normalcy that Amber longs for.

Amber put on a smile and struggled through the visit, appearing as if nothing was wrong, but inside she was hurting.

“It drained her, it drained all the energy from her,” Sharon said. “They came and brought flowers for her birthday. There were a lot of people here. She was listening to everyone’s conversations.”

Almost as soon as the last guest left, the family called 911.

A Medical Mystery

The list of doctors that Amber has come to know is somewhat of a who’s who of regional medical experts.

There’s Dr. Kelly Siemens, family practitioner; neuromuscular medicine specialist Dr. Craig McDonald; neurologist Dr. Shahrzad Akhtar; Dr. Manish Upadhyay, endocrinology; Dr. S Khizer Khaderi, ophthalmology; Dr. David Copenhaver, from UC Davis’ pain clinic; and Dr. Gregory Enns, pediatric genetics specialist at Lucile Packard Children’s Hospital at Stanford.

It’s this team that Amber has had to put her faith in to find what’s been causing her rapid deterioration and perhaps more importantly, what can be done about it. Lately, it’s been all about tests for Amber, some of them painful and intrusive.

But Amber soldiers on, knowing that one of the tests may reveal something that’s been overlooked, a small clue that might help solve the mysterious disease.

“We do now know for sure, 100 percent, that she does not have MNGIE,” Sharon said in an interview last week. “The team of doctors has started looking elsewhere.”

But just days after the interview, Sharon wrote that the MNGIE had not been completey ruled out and that more genetic testing would need to be performed.

Mitochondrial Neurogastrointestinal Encephalopathy or MNGIE, is a mitochondrial disorder that could be fatal to Amber.

The team has so far looked at a variety of things that may be wrong with Amber -- Crohn’s disease, mitochondrial disorders, lupus, stomach ulcers and others.

“They never really said to us that it can be anything,” Sharon said. “They are not telling us a whole lot of what it could be.”

A recent appointment with UC Davis Medical Center's Dr. Kristin Herman has revealed that Amber may have a condition called Ulcerative Colitis, an inflammatory bowel disease. On Monday, Amber took some more genetic tests said her mother.

"Because of the mutations there is many other disorders or diseases that can go with this and with Amber's history the team has some ideas so finally maybe some hope for Amber," Sharon Oerding wrote in an e-mail to Dixon Patch.

Faith in friends, alternative medication

Aside from the work her doctors are doing, hope for Amber comes in spoonfuls of friendship and alternative medicine.

Amber loves her friends, but visits from them take all the energy she has, her mother said.

“Today she had friends who she hadn’t seen in a long time, they came into her room and they brought her some flowers, she carried a long conversation,” Sharon said in a phone interview last week. “They were here for 40 minutes which is a long time for Amber. She puts on a front as if she’s not in pain. She puts up a front, but not for Steven and I, and Austin.”

Amber's father Steven and her brother Austin, have also seen firsthand how the disease has affected Amber. Someone else that Amber does not hide her pain from is her friend Corrine Rubio.

“I have known Amber since freshman year I met her when I was 14,” said Rubio, who is now 19.  “She was new to Dixon. I knew she was sick and she always had some kind of disease. I was fully aware that she had problems going on. She didn’t like to tell people, but she’s very good at smiling and putting on a happy face and acting like nothing is wrong.”

But it became evident to Rubio that Amber was sicker than she led on. Many of Amber’s friends did not know how to deal with Amber’s sickness after she came clean to them about it. Some of them distanced themselves from Amber.

But it was a handful of friends – including Rubio, Shaylen Sanders, Brigit Udell and cousin Natalie Goulart – that grew closer to Amber and did not shy away.

“She is one of my best friends and has always been there for me,” Rubio said. “Why would I leave someone when they would need me most? I guess that’s your real test of who your friends are. I was never going to leave her. I just think this age is a very hard age to deal with death and sickness. So I think kids at my age don’t know how to deal with it and they don’t know how to help her.”

Rubio helps Amber by visiting her and talking about things that girls love to talk about.

“We watch our shows, we watch movies and we talk a lot about God,” Rubio said.  “We go for walks. I walk her in a wheelchair. She likes to go on evening walks and she likes to talk about God and talk about life. She’s not my friend, she is my sister and she is my best friend.”

Rubio tries to visit Amber once a week, typically on Fridays when Rubio has a day off from work, she said. The duo spends afternoons watching TV and when Amber is up for it, doing art projects.

But as much as Amber loves seeing her friends, her mother said that visitors should call first before coming to see Amber.

“She can talk to you, but she loses her train of thought, sometimes she will pause in between to remember,” Sharon said. “She enjoys visits, but truthfully she would rather not have visitors because it’s very difficult for her.”

Nonetheless, the family is not against opening up their home to visitors, but the Oerdings ask them to call in advance.

Amber is now taking a new, alternative form of medicine in the form of an oil derived from a fruit that the oil’s creator, scientist and CEO of Fishrock Laboratories Le Thuy Vuong, calls Red Melon.

“The oil is from Southeast Asia,” Vuong said.

As a student at UC Davis, Vuong used the Red Melon oil as her dissertation project, she said.

“I was looking for a source very high in beta carotene (and) Vitamin A as a way to prevent Vitamin A deficiency in rural areas of Vietnam,” she said. “So I came across this fruit. And did several studies to validate it. The dissertation is on beta carotene and I devised a method to extract oil from the fruit.”

Together with oxycodone, the Red Melon oil is helping Amber with pain management. The oil contains  fatty acids – Omega 3, Omega 6 and Omega 9 –  that Amber would normally get through eating.

But because of the pain in her stomach it can be a challenge getting her to eat, her mother said. The oil serves to stimulate her appetite Vuong said and deliver much-needed nutrients to her body. Vuong said that the oil has gone through clinical trials in Vietnam, but has yet to have achieved them in the U.S.

Amber takes a spoonful of the medication a day in hope that the pain will not make her day miserable.

“By taking the oil I hope that it will deliver vitamins to her,” Vuong said

Amber has a lot of testing in her future. Amber’s team of doctors believe that she has a mitochondrial disorder going on, possibly a genetic disorder that will require additional genetic testing. Amber and her family are crossing their fingers in hopes that they will soon solve the mystery.

Dixon Patch will continue to follow Amber as she continues her struggle.

Editor's Note: To arrange a time to visit with Amber, contact Sharon Oerding at (707) 685-3321.