A local family is reaching halfway across the world to help a 16-year-old girl with an underdiagnosed disease.

Kari and Michael Ulrich of Albert Lea and their two sons, Ben and Noah, have set up a Web site and trust account for Ashleigh Botha of Nelson Mandela Bay, South Africa. Ashleigh was diagnosed with a progressive form of fibromuscular dysplasia. Kari Ulrich also has fibromuscular dysplasia.

Ulrich said she met Ashleigh on Facebook, the social networking Web site. “My heart just went out to her,” she said. “She’s at the top of her class, but she can’t go to school. She can’t go out, so her friends come to her.

“She’s an amazing girl, and she wants to be a model.”

FMD is a disease that causes arteries to have irregular cell development, causing the artery to become narrow in some places. When the artery becomes narrow enough, blood flow slows down and symptoms of FMD occur, according to the Fibromuscular Dysplasia Society of America.

Ashleigh’s form of the disease causes her blood pressure to soar to dangerously high rates. It’s also taken a toll on her kidneys so they don’t function as they should. The right kidney is functioning at less than 30 percent and her left 60 percent.

She also suffers from daily pain and migraines, which leave her confined to her bed at times. Because of her condition, she can’t take pain medication.

What’s more, Ashleigh has a spinal condition called spondylolithosis, which has caused her spine to bend 39 degrees off center, making her hips, shoulders and the rest of her body skew. Doctors have told her there is a good possibility she will need an operation to insert a steel rod in her vertebra with a metal plate and screws to enable correction as her condition worsens. U.S. doctors believe there may be a link between Ashleigh’s artery disease and spine disease.

According to Ashleigh’s mother, Colleen, South African doctors do not have the experience or knowledge to treat FMD and if it is not managed correctly, there can be major complications. Her doctors have advised her parents to take her to the United States for treatment.

Now, Ashleigh is on medication that American specialists do not prescribe. In the U.S., there are specific medicines for the disease.

If she can come to the U.S., Ashleigh would either see Dr. Jeffrey Olin, director of vascular medicine at Mount Sinai School of Medicine in New York, or Dr. Heather Gornick of the Cleveland Clinic.

Ulrich said at a recent conference, Ashleigh’s case came up and there is a possibility she may be seen on a pro-bono basis at the Cleveland Clinic.

That could be some good news for the family, because the family’s medical aid is refusing to pay for surgery for her because it will not cure her. There is no cure for FMD.

The family’s medical bills are adding up, Ulrich said, and it’s extremely difficult to get clearance for her and her family to come to America. That’s why she’s stepped in to help.

As a member of the Fibromuscular Dysplasia Society of America board of directors, Ulrich has given the family a lot of information and put them in touch with her doctors.

“We are so lucky to have good health care here,” Ulrich said of her close proximity to the Mayo Clinic.

FMD was recently reclassified from a rare disease to an underdiagnosed disease. When Ulrich was diagnosed two years ago, it was a rare disease. Since her diagnosis, she has heard of three other people from this area who have the disease.

Young women with undiagnosed FMD are going to the emergency room and having tests for heart attacks, Ulrich said.

“I’m wondering how many people are out there who have not been diagnosed,” Ulrich said. “Anyone with high blood pressure before the age of 20 should be screened.”

Ulrich was diagnosed with FMD two years ago, after she tried to run the Tiger Trot with her husband and started to feel dizzy and her pulse began to beat very fast. She complained of a whooshing noise in her ear.

Ulrich saw a cardiologist at the Mayo Clinic who did many tests and found that her carotid arteries the arteries that carry blood to the head and neck, were not straight. It looked more like beads on a string, which explained the whooshing noise. More tests revealed the problem everywhere.

Ulrich’s FMD is widespread, with many symptoms based on which part of her body is affected. In addition to the carotid arteries, the mesentary and celiac arteries are affected. These supply the major organs with blood. Ulrich experiences abdominal pain after every meal, so she eats small, frequent meals and is on a vegetarian diet.

FMD also affects her renal artery, which goes to the kidney. This causes high blood pressure, so she takes three blood pressure medications. She also has two small aneurysms that she has monitored yearly.

Lastly, Ulrich is affected by FMD in her femoral artery, in the legs, which causes leg pain and weakness.

She has to pay attention and monitor her body. Her sons have learned how to notice if their mom has signs of a stroke, such as her face drooping and slurred speech. If that happens, they know they need to call 911, because there is a strong risk of stroke with FMD.

She had no information about the disease until she found the FMDSA. She joined the board to help others who are diagnosed feel more at ease, she said. The main goal of the board is to educate patients and physicians about the disease. She’s attended many conferences.

An international patient registry for the disease was recently set up and nine sites are participating, including seven in the U.S.: Cleveland Clinic, Ochsner Clinic in New Orleans, Mount Sinai School of Medicine, Mayo Clinic, the Institute of Vascular Health in South Carolina, the North Central Heart Institute in Sioux Falls, S.D., and the University of Michigan at Ann Arbor. There are also centers in Germany and The Netherlands.

The registry will allow for collection of clinical data such as the date of diagnosis, types of tests conducted and results of these tests, medical history, family history, subsequent clinical events and outcomes. The information can help determine the natural course of the disease and which procedures are more effective to relieve symptoms and reduce adverse outcomes, according to the FMDSA Web site.

“There are 50 patients on the registry so far, and children will be included on the registry because there may be a genetic component,” Ulrich said.

She added that 100 patients have logged onto the FMDSA Web site since the beginning of 2009.

Ulrich said Ashleigh’s fundraiser has no affiliation to the FMDSA, although others who are members have helped, including a patient in the Twin Cities who organized a pizza fundraiser for Ashleigh.

A mall in Michigan recently donated coins from its fountain, totaling $500, to Ashleigh’s cause, Ulrich added.

Ulrich said every dollar makes a difference in saving Ashleigh’s life, but she understands if people are not able to donate at this time.

— Staff writer Brie Cohen contributed to this story.