It is said a parent would go to the ends of the earth to help their sick child.
For one Hartsville family, that turned into a trip to Thailand for an experimental treatment that is already appearing to show positive results.
Six-year-old Anastasia Murray, known as Ana, was born with spina bifida, a condition in which part of the spinal cord fails to develop or close properly while the child remains in the womb.
The condition occurs in roughly 0.4 of every 1,000 births in the United States, according to the National Institute of Health. The condition can cause problems such as leg weakness and paralysis, along with bladder and bowel control issues, depending on the severity of the condition.
In Ana’s case, she was born paralyzed from the belly button down and has been confined to a wheelchair, according to her sister, Sarah. She also has a shunt to keep fluid from accumulating on her brain, which is another common side effect of spina bifida.
“We had looked into therapies online, and my mom began looking into stem cells,” she said. “She found other families in America tat had gotten them and seen results.”
The treatment, which is not currently used in the U.S., uses stem cells obtained from umbilical cords. Those stem cells have the ability to develop into virtually any type of cell in the human body.
Studies in the U.S. have shown inconclusive results, with some patients seeing positive results and others seeing no impact.
“We weighed the options and talked about it as a family. We also had to raise the money to go,” Sarah said.
The family got in contact with Beike, a biotechnology company based out of China that is the world’s largest stem cell provider and owns the hospital in Thailand where the treatment took place.
“We contacted families around the world to see their outcomes,” said Christine Murray, Ana’s mother. “One child went from not being able to eat to no longer having a feeding tube. We talked to one family with a spina bifida child and that child is walking now.”
The process required extensive testing, which was done at Vanderbilt Children’s Hospital, before the company could grant approval.
The next step was raising $40,000 to cover expenses for the trip to Thailand and the stem cell treatment. Ana was there from April 10 until May 10.
“It’s a 25-day hospital stay,” Sarah said. “During those 25 days, she received eight stem-cell packets through an IV. They also did 4-5 hours of physical therapy each day.”
The treatment also involved injections of nerve growth factor, a hyperbaric oxygen chamber, aqua therapy and transcranial magnetic stimulation (TMS), which uses magnets to stimulate the brain.
Since returning to the U.S., the first-grade student has seen significant improvements to her condition, according to the family.
She is now able to move her left leg and flex her left foot and can pull up to stand with assistance. Ana’s kidney function has also seen improvement and she no longer refluxes urine back into the bladder.
Ana’s muscle function has gone from a 0 (on a five-point scale) to a 1 in her right leg and from a 0.5 to a 2 in the left leg, according to her mother.
“She has improved balance and overall body strength,” said Christine, who adopted Ana shortly after her birth. “Even if Ana never takes a step, if it fixes her bladder and kidneys, those are huge improvements. She may never walk and run, but being able to transfer out of a wheelchair is huge independence.”
“I feel every child needs a family, and I feel like God led us to Ana,” Christine said. “We were foster parents for several years previously. Ana was a special case and was in the foster care system at 2 weeks old.”
The family is working to raise another $40,000 to fund a second stem cell treatment and has launched a GoFundMe page, anastemcells. Donations can also be made to an account at Wilson Bank & Trust.
“Due to her great physical strides after her first stem cell treatment, we are seeking a second treatment,” the family said via Anastemcells, a Facebook page created to spread the word about the child and the stem cell treatment.
“She is very determined to walk. Ana asks me every day, ‘Mommy, help me walk,’ ” said Christine Murray.
Reach Chris Gregory at 615-374-3556 or firstname.lastname@example.org.