Mailia Goforth, center, prepares to undergo an experimental stem cell procedure in the Dominican Republic. Doctors hope stem cells from her own blood will help heal high blood pressure in her lungs so she can have a life-saving heart surgery. Nurses Amie Ryan, left, and Emily Storrer, right, from RADY Children’s Hospital in San Diego, observed the procedure while volunteering in the area.
Pasco teen begins experimental stem cell treatment
By Michelle Dupler, Herald staff writer
PASCO — Once upon a time, Mailia Goforth was a young girl dreaming of a miracle that would break the curse cast over her as a child.
She waited 12 years for someone to fix her heart, which while full of love has a defect that makes her weak and steals the breath from her lungs.
Last year, a wizard entered the tale holding in his hands an almost magical treatment using her own blood, but it appeared it might take more time than Mailia had for her parents to find the money to pay.
Max and Andrea Goforth wished for a miracle for their daughter, but Mailia grew weaker and her parents grew more afraid, even though they never gave up hope.
But across the land, a fairy godmother heard of Mailia's curse and waved a wand to grant her dearest wish -- a chance at life free from the curse that has bound her.
Mailia Goforth on Wednesday became one of a handful of people in the U.S. to get an experimental stem cell treatment that could end up not only saving her life, but allow her to live the normal one she's never been able to experience.
Mailia, 16, has Eisenmenger syndrome, a condition that affects the blood flow to the heart that in her case is caused by a hole 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.
She can't walk more than a few steps without tiring, and 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.
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 believed she found an answer to Mailia's problem when she learned about Dr. Zannos Grekos -- Mailia's wizard.
Grekos 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 $64,000 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 told the Herald in August.
"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.
The stem cells are flown 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.
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.
Once Max and Andrea Goforth knew they wanted Grekos to treat Mailia, they started raising money as fast as they could. They figured they'd need the $64,000 for the stem cell treatment, plus $10,000 for travel and expenses.
They also expect to need the money for a second stem cell treatment in about a year. They hope the surgery to correct Mailia's heart defect will be covered by insurance.
By the end of April, the family had raised $47,000 -- significant progress, but not enough to start Mailia's journey to the Dominican Republic.
Andrea Goforth said she's stayed in constant contact with Dr. Grekos and e-mailed him an update after their last fundraiser in April to tell him how much they'd been able to raise.
In response, she got a surprise she's describing as Mailia's miracle come to life.
Dr. Grekos' staff at his company Regenocyte wrote back to tell Mailia's parents he was willing to take $42,000 of the money they'd raised to perform Mailia's stem cell procedure, and that a nonprofit called the Alliance for Adult Stem Cell Research and Therapy -- Mailia's fairy godmother -- was going to pay the rest.
After they got the news, Max and Andrea Goforth each scheduled a month off from their jobs, got the family's SUV in shape for the more than 4,000-mile, nine-day drive, and set off on a cross-country adventure.
They arrived in Florida about a week ago, where Mailia underwent preliminary tests and her blood was drawn and whisked away to Israel to make stem cells.
She flew to the Dominican Republic a week ago, and on Wednesday had nearly 58 million stem cells pumped into the arteries in her lungs through a catheter.
Within days, she'll be on her way back home.
"This is an adventure," Andrea Goforth said by telephone from Florida. "This is a first for us, as it is for many. I hope Mailia will be able to come back and tell a very positive story about her journey for others."
Grekos has 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 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.
Right now, Andrea Goforth is focusing her prayers on a successful stem cell procedure that will allow Mailia's heart repair within a matter of months.
But she's also worried about how the family will pay for additional procedures with just $33 left in the Mailia's Miracle fundraising account after the costs of the procedure and trip.
The family plans additional fundraisers when they return home, and has set up a website called mailiasmiracle.com that tells Mailia's story and gives information on how people can donate.