Mailia's miracle: Family struggles to pay for teen's experimental surgery
By Michelle Dupler, Herald staff writer
Herald - Andrea 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.
In a country house in Franklin County, surrounded by horse pastures, lives a sheltered young girl who talks to her parrot and animals and dreams of a normal life. But a cloud hangs over her, a curse cast at birth that could claim her life before her dreams are ever realized.
In a way, the story of 15-year-old Mailia Goforth is like a fairy tale — not the cheerful Disney versions full of song, but the darker ones told by the Brothers Grimm. Like Sleeping Beauty — who was sheltered by her parents from the danger of a simple prick from a spindle — Mailia has lived a secluded life, unable to attend school or even have many friends except those she’s found online. But for Mailia, 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 Eisenmenger’s Syndrome, 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 high 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 service dog and an oxygen tank on the back so she can breathe.
For seven months of the year, when temperatures are cool, she can’t venture outdoors because of the strain on her lungs and her susceptibility to viruses.
And time is running out for her. 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.
At this point in the tale, a wizard enters: Dr. Zannos Grekos, a Miami Cardiologist who has promised the hope of a cure derived from Mailia’s own blood.
Grekos has developed 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, so Grekos flies with patients to the Dominican Republic to perform the procedure. Because it is experimental, the cost of treatment is not covered by the family’s 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 normally in every person’s blood and tell other cells to become brain tissue, heart tissue or liver tissue, Grekos said. “We use ones that are specific in this instance for blood vessels,” he said.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.
The stem cells are flown and hand couriered from Israel to the Dominican Republic where Mailia would be waiting 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, Grekos 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.
He said 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 took that information and applied it to patients that had poor circulation of the lungs,” he said. “We found we were able to reduce the pressures in patients after treatment.”
Grekos said he started using adult stem cells to treat heart patients in 2006, and began using the treatment for lung patients about 18 months ago. In that time, he’s successfully treated 20-30 patients with pulmonary hypertension. The procedure isn’t without controversy. Dr. Irving Weissman, a Stanford researcher and president of the International Society for Stem Cell Research, told CNN in July that Grekos’ work has no basis in medicine or science.
But Grekos countered that Weissman, as a researcher focused on use of embryonic stem cells, just doesn’t understand.
“He is not aware of all of the adult stem cell research,” Grekos said.
The Florida Department of Health shows Grekos has been licensed to practice medicine in the state since 1992 with no disciplinary actions on his record.
With no other realistic options for Mailia, Andrea and Max Goforth are putting their faith and trust in Grekos that he can give their daughter the normal life she craves.
“We have been told there is no hope, no cure, that her condition is very rare,” Andrea Goforth said. “I have faith and hope that technology has finally caught up.”
Grekos said if the stem cell therapy is successful, Mailia’s pulmonary hypertension could be reduced enough that she could have a relatively normal life without requiring oxygen 24/7 and perhaps even be able to play sports.
Mailia(’s) 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 especially baseball.”
But that will require her parents raising $75,000 for the treatment and the trek to the Dominican Republic. The Goforth’s are grateful and hoping to find the assistance to organize several events, such as a gala night at a local winery or a golf tournament, to raise the money.
The family also has set up a website called Mailia’s Miracle that tells Mailia’s story and gives information on how people can help and donate.
“It has been almost ingrained in us that this is what she needs,” she said. “We want her regenerated and healed. The reversal of this has the potential of her living to a ripe old age ... to actually really experience life physically with no holds barred. What we want is to see her happy, fulfilling her life’s purpose and to help other’s faced with similar circumstances.”
Donations can be made by going into any HAPO Community Credit Union and making a donation to Mailia’s Miracle fund. Information about other ways to donate is at http://www.mailiasmiracle.com/.