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A second chance for Mailia

Two years ago, teenager Mailia Goforth couldn't walk more than a few steps without tiring, and she spent most of the year indoors because cool weather was too much of a strain on her lungs.

Since having an experimental stem cell transfusion last year, Mailia not only can walk a little farther -- she has been doing a little dancing.

"I feel fantastic," the smiling 17-year-old from Franklin County said. "I have a bit more energy. ... I'm going to a ton of baseball games. I don't get tired as much."

But the treatment wasn't a cure, and she and her family hope a second round of stem cells will improve the pressure in her lungs enough that she can have surgery to repair a hole in her heart -- and lead a normal, healthy life for the first time.

As a toddler, Mailia was diagnosed with Eisenmenger syndrome, a condition that affects the blood flow to the heart that in her case is caused by a tear in her heart's wall.

She also suffers from secondary pulmonary hypertension, or high blood pressure in her lungs. Her blood pressure is high because the hole in her heart allows too much blood to flow from her heart to her lungs, causing her blood vessels to constrict, and stiffen and strain her heart. The pressure also stops surgeons from closing the hole.

That in turn means not enough blood flows into her lungs, and she becomes fatigued and short of breath.

A double-lung and heart transplant -- the customary treatment for Mailia's condition -- is not an option, as doctors have told the family Mailia would not survive.

Andrea Goforth, Mailia's mother, believed she found an answer to Mailia's problem when she learned about Dr. Zannos Grekos, a Miami cardiologist who developed an experimental technique to repair pulmonary hypertension using adult stem cells.

The procedure is so experimental, it can't legally be done in the United States because it isn't approved by the Food and Drug Administration, so Grekos flies with patients to the Dominican Republic to perform the procedure, and the $64,000 cost isn't covered by insurance.

Blood is drawn from the patient and flown to a lab in Israel, where stem cells are extracted and activated with a protein, known as a growth factor, to cause them to multiply.

Growth factors are produced in every person's blood and tell other cells to become brain tissue, heart tissue or liver tissue, Grekos explained to the Herald in 2009.

Every person also has stem cells running around in their body like miniature repairmen, and when they can be extracted, multiplied and told what to do, they can repair damaged blood vessels and even make new ones.

The stem cells would be flown from Israel to the Dominican Republic, where Mailia would wait to have them inserted into her lungs through a small tube. The stem cells would attach to her pulmonary blood vessels and help them regenerate.

For Mailia, that would reduce her blood pressure, making it easier for her to breathe and allow surgeons to repair the hole in her heart.

The first round of stem cell treatment improved the pressure in her lungs by about 30 percent, Andrea Goforth said.

But that is about halfway to where Mailia needs to be to withstand heart surgery.

"What's really noticeable is her energy level," Andrea said. "Before we left for the Dominican Republic, she was really sick -- on death's door. ... With drugs, she hadn't even gotten a 5 percent improvement."

The family plans to return to Grekos in October for a second treatment -- this time with double the amount of stem cells.

They have continued to raise money, and need about $12,000 to pay for the second treatment and travel expenses.

They hope sometime next year, Mailia could get the surgery that will not only save her life, but allow her to go on to dance and swim and open that animal sanctuary in Costa Rica of which she has always dreamed.

And once Mailia has her miracle, Andrea wants to help other people find theirs.

The family created a website, mailiasmiracle.com, with information about Mailia's condition, how to contact them and how to donate.

They also have an account at HAPO Community Credit Union where donations can be made to Mailia's Miracle fund.

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