A mother knows when something isn't right. Mary Schneider had cared for her daughter for five years when Ryan was born and she knew that something was wrong.
"He had feeding issues from the breast, the bottle and a spoon. He started missing milestones that I knew he should reach," said the Batavia resident. "My pediatrician kept telling me, 'Let's just wait and see.'"
But when Ryan reached the age of 2, Schneider embarked on a campaign to help her child that would take her into the medical world of stem cells and into the controversies attached to researching this promising field.
"At the age of 2, Ryan could only say two words and neither one was 'Momma,'" Schneider said. "He only weighed 25 pounds. His upper-body strength was all wrong. His fists were clenched. His arms were curled. When I tried to straighten his arms and fingers to wash him, he would scream with pain."
Schneider finally convinced her pediatrician that this was not something her son was "going to grow out of."
The doctor referred Ryan to a neurologist who diagnosed the child with mild to moderate cerebral palsy.
"And then she sent my husband and me out the door without any information on how to deal with this or what to do," Schneider said.
Fortunately, Schneider had been involved with Easter Seals DuPage fundraising and had a friend there who provided her with information about cerebral palsy. She learned that the condition is caused from an injury that could happen before, during or after birth when the brain does not get oxygen.
"Sort of like a little stroke," she said.
About 6,500 infants and preschoolers are diagnosed with the condition each year. The symptoms vary for every child, making diagnosis difficult. Schneider and her husband, Steve, were devastated by the diagnosis, and Schneider was exhausted when she went to bed the day they heard the news.
"The next day, I woke up suddenly remembering that I had banked Ryan's stem cells," Schneider said.
About a year before Ryan was born, Schneider's cousin lost his 4-year-old son to leukemia. The attempts to save his life, including a bone marrow transplant, had failed. The one procedure that couldn't be tried was a cord blood stem cell transfusion, because the cells were not available.
The Schneiders had contacted a private organization to bank the cord blood before Ryan's birth. The process would cost $1,600 and the annual storage fee would be $95, but the couple decided it would be a wise investment.
Schneider wondered if these banked cells could make a difference in her son's health. She went on the Internet and entered the name of her son's condition and the term "stem cells" into a search engine.
"Nothing came up," she recalled.
Undaunted, the mother began to research medical journals and started calling physicians for information.
During this process, Schneider took her son for evaluation of his feeding, occupational, physical and speech issues. Extensive metabolic and chromosomal blood tests were done at Schneider's request. She wanted to be absolutely sure she was not overlooking something about her son.
"I wanted to be confident that I was dealing with cerebral palsy and not something else," she explained.
Schneider called dozens of doctors in a quest for someone who would re-infuse the cord blood cells into her son. She was turned down over and over until she finally found Dr. Joanne Kurtzberg at Duke University.
"She is a very busy pediatric oncologist whose commitment to children is amazing. And she is the only doctor in the country who will do this. I called her daily and left messages. After about two weeks, she called me," Schneider said. "I had to do something because I was watching my son wither away in front of me."
Kurtzberg made it clear that there were no promises of success, but agreed to do the procedure. The worst that could happen was nothing would happen. Ryan would not reject his own stem cells.
On Oct. 11, 2005, Ryan received the infusion of stem cells. It took about 20 minutes for the solution of cells to drip through an IV in the back of his hand.
"What is so amazing is that the stem cells land where they are needed. They find the damage and begin to proliferate to repair it," Schneider said. "They land within minutes of the cells entering the body."
The entire procedure took about two hours.
"Then we went home. I wanted to be objective and not read anything into what happened next," Schneider said. "I tried to be very scientific."
A week after they returned home, her son, who had always struggled to swallow every bite of food and who never had put together more than a two- or three-word sentence, announced he was hungry.
"I want 'aroni mom" was the first sentence that came tumbling out of her son's mouth.
"Each day it was like waking up to a new kid. After two years of status quo, he was changing," Schneider said.
She carefully monitored his progress. Thirty days after the procedure, she took her son back to the Easter Seals feeding clinic for evaluation.
She was told that all feeding issues were gone. Other evaluations from therapists showed six- to eight-month progressions happening within a one-week period.
"His hands and arms improved. By Christmas he could put on his own jacket. He could spread his fingers and touch them tip to tip and straighten out his arms. He couldn't do any of these things before."
For three months, Ryan's body raced to catch up and he is now considered to be at a normal stage of development. He has gained five pounds and chatters like any other 3-year-old.
It would be easy for Schneider to simply sit back and count her blessings now. But she knows there are other children who might be helped. Parents who have heard Ryan's story have begun to call her.
"Ryan was the first one with cerebral palsy to have the treatment. But I told another family with a 5-year-old girl who had gait issues and tired easily when she walked from cerebral palsy about Dr. Kurtzberg. They had also banked their daughter's cord blood and took her for the treatment. All of her walking issues have disappeared, and she runs around like every other kid her age. I have spoken to three more families, and they are also going to go."
The cost of the infusion is $10,000. Travel expenses add to the amount, but Schneider said this amount is nothing compared to the cost of providing therapy for children with cerebral palsy. She was able to get financial help through the National Transplant Assistance Fund.
"There are national funds available if people know how to ask for help," she said.
Although many people support adult stem cell research, there are some who connect it to embryonic research, which raises many concerns.
"Stem cell research needs to continue," Schneider said. "This should be available to all children. Not everyone has saved their child's cord blood, so there should be public banks set up. There should be assistance for parents to bank cord blood. More funding and education is needed with the public banks."
During Schneider's quest for help, she spoke with many organizations. Some called her back to find out whether the procedure was successful.
She has twice been invited to speak in Washington, D.C.
"I was there when President Bush vetoed the stem cell research bill," said Schneider, referring to House Resolution 810, the Stem Cell Research Enhancement Act of 2005. "I told the president that I wanted to see the research continue. I was disappointed that the bill was vetoed, but I feel that it is important to keep people talking about this issue instead of taking sides."
Her story was passed along to U.S. Sens. Barack Obama, D-Ill., and Sam Brownback, R-Kan., who both used Ryan's story on the U.S. Senate floor during the bio-ethics debate days prior to the president's veto.
Schneider also spoke as part of a recent press conference with Gov. Rod Blagojevich at University of Illinois at Chicago where $5 million in research grants were awarded.
"It was all doctors and me," she said. "They were very interested in Ryan's story and progress. I plan to continue to do everything I can to educate people about the value of banking cord blood."
Schneider has met some people who are strongly against stem cell research. She respects their opinions, but has some concerns.
"My question to them is that if, in the future, there was a cure for a debilitating condition or illness that afflicted your child, would you refuse the therapy based on the origins of the research?" Schneider said. "A parent will do anything for her child. All I was doing was trying to find help for my son."
