'A Total Miracle'
New stem cell therapy dramatically improves the life of a Pasadena child
By Carl Kozlowski 10/16/2013
As a result of that error, Grace lost all muscle tone and control. While she had been developing at a normal pace and was sitting up on her own before the surgery, she was unable to sit up again until she was 2. But her problems were much worse than that. As Olivia recalls, Grace could not reach for things or even raise her head. And, adding insult to the injury, Olivia and Rowdy were at first not told about the oxygen error, leaving them to assume Grace had simply been weakened by the surgery.
But this year, a series of what the couple considers miracles have occurred, ever since Grace's parents decided to take advantage of a little-known cutting-edge option for her care. They had Grace injected with stem cells from her own umbilical cord blood, a decision that has resulted in rapid and dramatic improvements in Grace's condition and a hope that she may some day fully recover and function at a normal level.
"Grace didn't have the strength in her hand to push a button in an elevator, so her finger would buckle," says Olivia. "Now she pushes all buttons, and she can hold a pen and crayon now after not being able to. We thought she'd never be able to write her name, but now she's coloring and can participate in school. She couldn't lean on her arms at a table, and now can do handstands on her full body weight.
"She used to be able to walk a little bit but couldn't stand still without reflexes to catch herself and would fall on her face. Now she can climb stairs by herself," says Olivia. "What we've seen so far is remarkable and life changing for her. Her level of joy has increased. It's beautiful to see her empowered and so strong."
The child's parents were able to involve Grace in a research trial to treat brain-related injuries with stem cells in association with Cord Blood Registry at Duke University, where she received an infusion of her banked cord blood in December 2012 and others in February and June. It takes four to six months for stem cells to turn into fully differentiated brain cells.
The stem cells have innate intelligence and they travel to where the damage to the body has occurred. In Grace's case, they went to her brain damage and repaired it, establishing a process of going from blank cells to fully differentiated brain cells. The dramatic improvements already seen in Grace are the payoff from the first two infusions, meaning that even greater strides are to come as a result of her June infusion.
Of course, Grace isn't the only child benefitting from such therapy, as her mother pointed out in offering an example of another successful case.
"One other little girl named Lavigne in Orange County had a stroke in her mother's womb and they did an MRI and found she was going to be paralyzed on one side her whole life," says Olivia. "But she went to the same doctor at Duke University. She had full recovery from paralysis and healing of her brain injury from stem cells; a total miracle.
"Grace's recovery has a good chance because the brain has plasticity and can bounce back. But for kids it's more complicated, because when the brain is still in early developmental stages that brain injury is likely going to be permanent, whereas someone who has a stroke as an adult can fully come back."
Amazingly, Olivia only learned about the stem-cell therapy by happenstance, when she was faced with the annual $100 storage bill for Grace's umbilical cord. Before paying for another year of what seemed to be an uncertain and unusual process, she decided to Google search for more information on whether the procedures actually worked.
"I came up with stories about other kids with amazing recovery and at that point my blood caught on fire. I had to do anything I could to get Grace treated," she says. "I applied to get into the Duke study, but they wanted kids who had spastic cerebral palsy and Grace has hypotonic cerebral palsy.
"This particular study is fully funded by Duke, so if you get into the study, the hospital pays for it," continues Olivia. "But if you don't get into the formal study, they still offer compassion treatment, and what Grace received wouldn't be funded at all. We used a site that crowdfunds for medical issues, raising a lot of money through giveforward.com, and we still have that up to raise money, along with oliviarosewood.com."
Such fundraising is vital for any family who goes through this procedure, as the process is highly expensive. Grace's three infusions cost $15,000 apiece, plus the family had to pay its own travel costs as well the costs of travel for a scientist to transport the umbilical cord, along with an extra seat reserved for the portable cryogenic freezer carrying Grace's cord.
The miracle-working doctor whom Olivia refers to is Dr. Joanne Kurtzberg, who has worked in the field of pediatric hematology and oncology for the past 33 years. Kurtzberg notes that the use of umbilical cord stem cells is a rapidly growing procedure in the treatment of children.
"It's common for indications like leukemia, aplastic anemia, immunodeficiency diseases and hemoglobinopathies for patients who don't have matched related or unrelated donors," wrote Kurtzberg in an email response to questions. "Cord blood is emerging as a novel source of cells for regenerative medicine and cell therapies. The treatment of children like Grace, to help restore function after brain injury, is experimental but looks promising."
Kurtzberg explains that cord blood units have variable numbers of cells, meaning that some units are big enough for transplant and some are not. When the correct sized unit is used - with the dose determined by the patient's weight - one dose is sufficient to rescue the hematopoietic system after chemotherapy or radiation therapy.
Yet, for the treatment that Grace received, it is still unknown how many doses will be reared for maximum benefit. It is also unfortunately still unclear how far the infusions can ultimately take the young patients on their road to recovery.
Any parent knows, however, that they must try to overcome any obstacle to save or improve the lives of their children. And so it is that, with the bills piling up and a hopeful yet uncertain future ahead, Olivia still remains optimistic and determined to help Grace continue the fight.
"I would say it was a lucky thing that we did it, because at the time of Grace's birth there was no evidence that the cord would be good for anything," says Olivia. "We kind of had an idea that it might work out, and I had an intuitive hunch that it would be a good thing to do. Now there's a lot more going on with stem cells, but I still don't think parents realize it could come in handy. A lot of people think to bank the umbilical cord if heart problems run in the family, but she was born healthy and we had no problems running in the family. I just had a feeling it might be a good thing down the line."