Mary Schneider’s Story: Stem Cells and a Mother’s Unrelenting Drive to Reverse Her Son’s Cerebral Palsy
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| Mary Schneider (far left) poses in the White House Red Room with White House Press Secretary Tony Snow, son Ryan, daughter Katie and husband Steve. Courtesy: Mary Schneider. | Mary Schneider knew something was wrong with her son’s development well before his doctors returned a diagnosis. Ryan could only say a couple of words by age two and his arms were curled and rigid. Worse, severe feeding difficulties limited his growth to just 25 pounds in those two years.
It was then that Ryan’s pediatrician referred his family to a neurologist who diagnosed Ryan with mild to moderate cerebral palsy. As has been the case for so many children before him, that diagnosis marked the beginning and the end of Ryan’s neurological treatment. And like so many parents before Mary, Ryan’s diagnosis marked the beginning of an emotional quest for better medical options for her beloved son.
But unlike many parents, Mary Schneider seems to have found an option that worked.
eNews recently caught up with Mary to ask her about her family’s journey to Duke University Medical Center where Ryan received a transfusion of his own umbilical cord blood stem cells - a procedure that seems to have reversed the onset of his cerebral palsy.
CNS Q & A with Mary Schneider:
[Interview conducted by e-mail with
Science Director Shane Smith
February to March, 2007]
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| Q |
Why did you reject the notion that Ryan’s cerebral palsy was a permanent condition, and how did you go about searching for better treatment options? |
| A |
The initial anger and denial that this was Ryan’s future was somewhat of a factor. I had fought so hard to find out what was wrong. After two years of doctors telling me “let’s wait and see” and “every kid is different,” we had a diagnosis of mild to moderate cerebral palsy and finally a face on what Ryan was to dealing with.
Throwing punches in the air does no good, so I turned my anger into action and denial into change. The morning after Ryan’s diagnosis I remembered his cord blood stem cells had been banked at birth. The light went on for me, and I started a search for someone to give him his stem cells back. I thought this seemed simple enough: “it’s his own stem cells and this should be a snap. Some doctors must be doing this procedure so I’ll just look for a doctor close to home that can give him his stem cells back.”
I called Ryan’s pediatrician for a referral to a local doctor who could do the infusion. He told me that I knew more about this than he did and that he had no idea where to refer me. I Googled the key words “cord blood” and “cerebral palsy treatment;” nothing came up.
Then it hit me that I may have come across some uncharted territory, but if I did succeed in finding a doctor and this actually worked for Ryan, my responsibility may well go beyond my own son. |
| Q |
You eventually found a doctor at Duke University, Dr. Joanne Kurtzberg, who was willing to perform an experimental infusion of Ryan’s own cord blood stem cells. What requirements did Ryan and your family have to meet in order to be eligible for the transfusion? |
| A |
In three weeks I logged 200-plus hours of internet researching and phone calls for help within the U.S.A alone. I did not want to go off-shore, nor did I think for a moment that I should. The stem cell researchers, with whom I spoke said “No,” and some even wanted Ryan to wait for their studies in four or five years. A few un-nerving conversations became all about the doctor and nothing about Ryan or his plight.
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| The lobby at Duke University Children’s Day Hospital and Health Center. Courtesy: Duke University. | It was a relief when Dr. Kurtzberg’s office returned my call very early one morning to say that she agreed to help, but I knew more work had to be done to be sure we were indeed looking at cerebral palsy and not some other condition that could present the same symptoms such as a chromosomal abnormality. I requested that occupational, physical and speech therapists evaluate Ryan, and we also obtained an assessment of his feeding needs through Easter Seals. Ryan’s pediatrician was very helpful at this point and ordered chromosomal and metabolic blood work as well.
Dr. Kurtzberg only requested that a DNA test be run to cross-check that the viable umbilical cord blood cells she received were indeed Ryan’s, and to send his medical records to-date. There was no clinical study in place at Duke in children with cerebral palsy, yet his own stem cells could not hurt him, only possibly help. I knew that if I could put a reasonable baseline in place before his stem cell infusion, it would provide a clearer idea of how he was doing before and after the procedure because, as a parent, it’s impossible to be objective. |
| Q |
How did Dr. Kurtzberg explain the pros and cons of this procedure? What happened during the stem cell infusion? |
| A |
The risks were minimal and every precaution was taken to monitor for them. Possible risks included an increase in heart rate and blood pressure, or a reaction to the residual preservative left in the cells after they are washed and prepared shortly prior to infusion.
The infusion was actually pretty easy and Ryan was made as comfortable as possible. An IV was placed in the back of his hand, and the vein was flushed. Next the stem cells were dripped into the vein for about twenty minutes, followed by a very slow saline drip for two hours to move the cells along. The cells landed where they needed to be in minutes.
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| Ryan Schneider pays his respects at the Vietnam Veterans Memorial in Washington, D.C. Courtesy: Mary Schneider. | The unspoken risk to me was that Ryan was using his cells not for a “life-saving” but a “life-changing” therapy for his future. Even after all I had done, was I doing the right thing?
During Ryan’s infusion, Dr. Kurtzberg told me that she still had some of Ryan’s cord blood in the cryofreezer and it could be expanded at some future date, but only to a limited extent due to technical limitations. She hopes that will change in the future, however.
Then we went home and prayed for the best. |
| Q |
What changes did you observe in Ryan’s behavior and development immediately following the transfusion? How is he doing now 1 1/2 years later? |
| A |
I was willing to accept any small change or none at all. I knew that I had tried to do the best I could for Ryan and was willing to move ahead with any therapy he would need.
Five days later he said “I want ‘aroni’s mom.” Before that he had never been hungry and without sentence structure, even after nine months of speech therapy for two hours a week. That was the first of many things Ryan did that surprised us. We all sat down and had some “mac and cheese.” He didn’t gag or choke on a single bite, which had been common at every feeding beforehand.
Thirty days after the stem cell infusion, the Easter Seals feeding clinic cleared Ryan of all previous issues. His appetite remains at a normal level and he is achieving proper growth standards and continues to gain height and weight. Over a three month period,
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| Katie and Ryan Schneider take a moment away from their chores at the Schneider family home in Batavia, IL. Courtesy: Mary Schneider. | Ryan showed speech improvements that normally require eight months to develop. His mobility and manual dexterity had also been restored to normal levels in the same time frame according to evaluations by Easter Seals. Spatial and tactile defensive responses also dissipated.
Today, Ryan is at the 50th percentile for his weight and 65th for height. His speech is monitored twenty minutes a week through the school district and is considered to be at or above normal levels.
Ryan has since shown no regression - only progress. He is aware of his new abilities and enjoys them by dressing himself, playing in the park like all the other kids and ratting out his nine year-old sister, Katie. He is expected to enter kindergarten without any special-needs education. As the Parent Teacher Organization president of my daughter’s school, I’m amazed at the potential cost-savings this stem cell procedure could bring to educational funding. |
| Q |
Senator Barack Obama, in his official stem cell statement on the congressional record, has said that the stem cells returned to Ryan’s bloodstream “seem to have cured him.” Do you think that your son has been cured? |
| A |
A: Of course we are thrilled with Ryan’s outcome, knowing that he has life’s options once again in his reach. But in the big picture, what I think does not matter. What we have seen could be considered anecdotal. I read hundreds of pages before Ryan’s transfusion on children’s research ethics to be certain that I would not violate any rights he had as a person, now or in the future. It was only then that I moved forward.
The clinical evaluations established before and through subsequent evaluations after Ryan’s transfusion have captured attention on several levels. An MRI at Duke University nine months after Ryan’s treatment showed white matter regeneration in areas of the brain that had been previously affected. They still cannot say with certainty that the regeneration is a direct result of the stem cells, yet I find the timing interesting.
There is currently a treatment study in place for at-risk newborns to address, scientifically, whether or not this constitutes a cure. The doctors that said “No” to Ryan are now very interested in the results. Politics may sometimes follow but should be balanced to offer information and opportunity to others in need. Senator Obama’s reaction was the same as doctors and others who have met Ryan. |
| Q |
What do you say to other special-needs parents who want to know how they can try this same procedure for their children? |
| A |
At this point only children with cerebral palsy or similar brain injury, and who have their own cord blood banked at birth are candidates for this treatment.
In order to receive donated umbilical cord blood stem cells, a patient currently has to go through chemotherapy like that endured by cancer patients. Chemotherapy is likely to do significant harm to children, and so is not an option for children with stable neurological conditions like Ryan’s. So it has to be the patient’s own cord blood banked at birth, and not a sibling or other donated stem cells.
To date, seven more children have seen Dr. Kurtzberg. Their issues are all different (as a parent might imagine) and their results vary based upon their previous level of impairment and the viability of the stem cells used.
The common thread is that each child has seen some kind of improvement. Ryan’s results are more than I had hoped for, yet for all the other children there has been a quality of life change on some level. Some of the major improvements parents have reported are in the areas of strength and mobility in both upper and lower body; feeding and gastrointestinal issues; reduction or elimination of seizure activity; body temperature regulation; speech; tactile defensive issues and visual tracking abilities. |
| Q |
Principal players on either side of the embryonic stem cell policy debate have incorporated Ryan’s story into their arguments. You were even invited to meet with President Bush and witness the veto of the Stem Cell Research Enhancement Act at the White House last year? Where do you stand in the national stem cell debate? |
| A |
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| President George W. Bush posed with the Schneider family before vetoing the Stem Cell Research Enhancement Act of 2005. Pictured from left are Barbara Eaker (Ryan’s grandmother), Steve Schneider, Ryan Schneider, President Bush, Katie Schneider, Mary Schneider and Richard J. Eaker (Ryan’s uncle). Courtesy: White House Press Office. | More importantly than where I stand is where I and my family sat in silent protest in the East Room of the White House as those around us stood and cheered the President’s veto. Not everyone in need has access to their own cord blood, and treatment should be available to all. Good people may disagree on the pursuit of additional types of research. My question to the opposition continues to be this: “When a cure is discovered, will you deny yourself or a loved one treatment based on the origin of the research?” |
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Mary Schneider is currently working to pass Illinois Senate Bill 0019, which would establish a statewide network of cord blood banks, and advocating for the distribution of funding from the C.W. Bill Young federal cord blood banking bill. In 2006 she spoke at a press conference prior to Illinois Governor Rod Blagojevich’s awarding of five million dollars to stem cell researchers in that state. Mary continues to council parents seeking treatment for their children at Duke University, a service she provides entirely on a volunteer basis.
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