Mailia’s miracle: Family struggles to pay for teen’s stem cells

In ALL ARTICLES on August 24, 2009 at 4:50 pm

Mailia’s miracle: Family struggles to pay for teen’s experimental surgery

Paul T. Erickson HeraldAndrea Goforth ponders the future of her daughter Mailia, 15, left, who has pulmonary hypertension. Goforth and her husband Max are hoping to raise enough money to take Mailia to the Dominican Republic for an experimental stem cell procedure.

(Edited for length) PASCO —15-year-old Mailia Goforth – the curse her parents are desperate to protect her from is a hole in the wall of her heart. And her parents have hope it can be lifted if they can find a way to pay the $75,000 fee.

Mailia Goforth 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.  She can’t walk more than a few steps without tiring. Her carriage is a motorized scooter with a basket on the front for her dog and an oxygen tank on the back so she can breathe.

An examination by her cardiologist in Portland in May showed the left side of her heart is collapsing, while the right side is enlarging.  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.

An experimental technique to repair pulmonary hypertension using adult stem cells. In fact, it’s so experimental it can’t legally be done in the United States because it isn’t approved by the Food and Drug Administration.  Because it is experimental, the cost of treatment is not covered by the family’s insurance.

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, he said.

For Mailia, that would reduce her blood pressure, making it easier for her to breathe and allow surgeons to give her a pulmonary artery band, which would reduce the blood flow through the hole in her heart.

The idea came from research into using adult stem cells to build natural bypasses and improve circulation in patients with blocked arteries and poor leg circulation.

“We found we were able to reduce the pressures in patients after treatment.”

Successfully treated 20-30 patients with pulmonary hypertension.

“We have been told there is no hope, no cure, that this is very rare,” Andrea Goforth said. “I have faith and hope in technology.”

If the stem cell therapy is successful, Mailia’s pulmonary hypertension could be reduced enough that she could have a relatively normal life without an oxygen tank and perhaps even be able to play sports.

Mailia has dreams both simple and lofty — she’d like to go to the mall like other teenagers and be able to swim like her idol, Michael Phelps. She also envisions one day running her own animal sanctuary in Costa Rica where she’d preserve endangered species.

“I see myself without my oxygen just being free and happy,” Mailia said. “Being like a normal person, doing the sports I want to do.”

But that will require her parents raising $75,000 for the treatment.  The family also has set up a Web site called Mailia’s Miracle that tells Mailia’s story and gives information how people can donate.  “What we want is to see her happy, fulfilling her life’s purpose.”

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