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A Parent’s
Perspective on
Mary Schneider’s Story
by Saba Bando |
What an incredible rush I got when I first connected with Mary Schneider in the fall of 2006. I was excited to hear her story and how she was able to help her son, Ryan, through the use of his own cord blood. Talking with her immediately brought several questions to my mind:
- Could this mean there was hope for my son, Zain, and the hundreds of thousands of other children with cerebral palsy?
- Is this a treatment possibility here in the United States?
- Since we don’t have Zain’s cord blood stored (as is the case with the majority of families), has any progress been made that would make him a candidate now?
- Aren’t scientists working on this?
The answers to my questions have all turned out to be a big “NO!” Instead, I found a huge divide between the supporters of umbilical/adult stem cell research and those who support embryonic stem cell research. Does it really matter which is better - can we exhaust the possibilities with what IS available first?
As various politicians, scientists and citizens debate these issues, our children continue to experience all of the symptoms of brain injury: difficulty walking, talking, GI problems, seizures, frequent illness, etc. We continue to work with our children, doing every therapy we believe will help manage their symptoms, but none of them even come close to a cure.
I’m usually the enthusiastic and positive one no matter who I stand next to. But my inability to cure my son has me at my wit’s end!
I believe that Ryan was cured and that his improvement was a direct result of the umbilical cord blood stem cells he received. I am so happy for him and his family and commend Mary for her persistence in getting Ryan the treatment he needed.
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Zain Bando, 2006 | When a story like this is used in political forums, unfortunately, uninformed people believe that things are great - “look, we cured cp!” I myself had this thought. That was until I discovered that this treatment doesn’t translate to most brain-injured children. I thought perhaps Dr. Kurtzberg, or other scientists, had made progress in this area and now there were solutions for children who don’t have their own cord blood. As Mary mentioned, this is not the case, not even with a sibling’s cord blood.
Hearing over and over again that we are years away from a clinical trial in the U.S. doesn’t help our children now or in the near future. More and more families are traveling overseas for stem cells. How are researchers in these off-shore clinics getting away with administering cord blood without immune suppressing drugs and chemotherapy? Is it possible to have a transplant without follow-up chemotherapy? Are any researchers from the U.S. studying this? Can researchers here find better ways to control immune rejection so that children can receive donated cord blood without toxic chemotherapy?
Is spending $20-30,000 and going overseas ourselves the only way for parents to find these answers? This is one of the most difficult decisions we face: should we spend our savings for another chance at hope? Wait years and hope the scientists find something for our children with cerebral palsy? Will their bodies be even more compromised by the time this happens?
It’s like other day-to-day questions we face: should our non-ambulatory child bear weight on their feet? Should I stretch them out? Botox? Surgery? We continue to be overwhelmed with these unfair but very real questions.
However, my biggest question is: what does Ryan’s story mean for Zain and his many peers in the same situation? Aside from our happiness for the Schneider Family and encouraging pregnant friends to spend the money and store their baby’s umbilical cord blood, I don’t know.
My hope is that we learn of a specific stem cell study for children with cerebral palsy in the U.S. My hope is that scientists working with umbilical cord blood find a way to administer these cells without it being the child’s own and without chemotherapy. My hope is for reliable information about what overseas clinics are doing for children with cerebral palsy to soon become available. My hope is that the public will be properly informed, without bias, regarding the benefits of all types of stem cell therapy.
My hope for my own family is to continue to move forward with strength and address Zain’s needs as they are right now - and continue to make noise to find a cure without any apology for believing this is possible.
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Saba Bando is the mother of a 7 year-old boy named Zain. He is a former 25-week preemie who has been diagnosed with spastic cerebral palsy. Zain is a first-grader and enjoys school, music and sports. He is verbal but has limited use of his hands and is unable to stand or walk. Saba lives in Downers Grove, Illinois, with her son and husband, Matt. Contact: s.bando@comcast.net
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