Mary Schneider Presentation at “A Toast”

Date: 06/20/2006

A Toast to Adult and Cord Blood Stem Cells: Helping Patients Now and in the Future

Senate Russell Office Building 385

Mary Schneider

Thank you for joining us this evening. My name is Mary Schneider. My husband Steve, our daughter Katie and I would like to share a special story with you about the youngest member of our family, Ryan.

Ryan’s medical problems began at birth. My husband Steve and I noticed that he had difficulty with feedings and he was falling behind with his motor skills. We heard the usual arguments that “Every kid is different” and “Let’s wait and see,” from the pediatricians but based in my experience, including raising Ryan’s older sister, Katie, I knew that something was wrong. By the age of 2, Ryan only had 2 words and neither one of them was “Mama”. He weighed only 25 pounds and was in the 1 percentile on the weight chart.

Pointing, whining and screaming were his only method of communication. We had Ryan evaluated through the early intervention program and he started speech therapy. 9 months after Ryan had started speech therapy, he had only gained 1 pound, spoke only 40 words with no sentence structure and only close family could understand him.

Ryan’s upper body strength was getting weaker, his hands were in fists most of the time and it hurt him to straighten out his hands and arms. It’s the little things that only a parent would notice that set the bells off. I presented these concerns to Ryan’s pediatrician who referred us to a neurologist.

On July 21, 2005 we got the diagnosis of mild to moderate Cerebral Palsy. My husband and I felt like we’d been punched in the stomach.

To shed some light on this condition that currently affects over a half a million American’s, about 6,500 new cases are diagnosed in infants to preschool age children every year. The research currently focuses on prevention.

Cerebral palsy is a general term that describes a group of disorders that appear in the first few years of life and affect a child’s ability to coordinate body movements. These disorders are caused by damage to a child’s brain early in the course of development. The damage can occur during fetal development, during the birth process or during the first few months after birth.

Cerebral palsy ranges from mild to severe. Physical signs include weakness and floppiness of muscles or spasticity and rigidity. In some cases, neurological disorders — such as mental retardation or seizures — also occur in children with cerebral palsy.

The light went on the morning following Ryan’s diagnosis. I looked at Steve and said, “The doctor said brain injury. We saved his cord blood! I wonder if they are using those stem cells to treat Cerebral Palsy.” For me this was a 2 +2 = 4 moment.

After 2 weeks on the net researching and many, many phone calls to leading researchers in stem cell therapy nationwide, I found very little hope or information and a lot of “No I won’t do the transfusion.” We were told that if the spasticity in Ryan’s hands and arms got to bad he could get Botox injections. But no one would give my son his own cord blood!!

You can get donated blood products from a stranger anytime for surgery or trauma. The situation was unacceptable! I called Dr. Harris, the head of the Cord Blood Registry bank where Ryan’s stem cells were stored. He suggested I get it touch with Dr. Joanne Kurtzberg at Duke University to see if she would do the infusion.

Dr. Kurtzberg agreed and Ryan’s autologous transplant took place on October 11, 2005. The procedure is really very simple. 20 minutes for the stem cells to drip through an IV in the back of the hand followed by saline drip for 2 hours to gently nudge the stem cells through the system. The stem cells know where they need to go and land there fairly quickly.

Given this opportunity for Ryan, I set up a protocol system on my own. Pre and post infusion evaluations and progress monitoring is being done with Easter Seals Dupage. I requested extensive metabolic and chromosonal blood tests to be done prior to treatment to rule out any other possibilities with his pediatrician.

My thought was: “If this works for Ryan, it could change his life and the lives of many other children in the future.” Although my efforts were applauded, this should not be the job of the parent but of the medical community and the federal government to allocate research dollars. Until this is a proven treatment, insurance companies typically will deny benefits leaving a huge financial burden to the family and precious few places to receive hope.

8 months post infusion, the progress Ryan has made is more than remarkable. He is no longer in need of any physical or occupational therapy as the dexterity in his hands and arms has returned. His feeding issues and apraxia were gone within 30 days. He is now at a normal weight at the 50th percentile and 65 percentile for height. Ryan speaks clearly (for a 3 yr old) and does so in sentences. His vocabulary is on target for his age and he is totally engaged in his surroundings. Every day for the first couple of months we woke up to a new Ryan! The one day I remember most fondly was when I put him on the phone with my mom and he said “Hi Grandma, I love you”.

His Pediatrician, Neurologist, Behavioral Psychologist, The Easter Seals OT, PT and Feeding Clinic are in agreement that these changes have occurred post-autologous cord blood transfusion. But yet we must all err to the side of caution to prevent any false hope until proper research is complete. No promises were ever made regarding Ryan’s outcome, only the opportunity to help our son was given. For this we will be forever grateful to Dr. Kurtzberg. All of Ryan’s doctors are given updates and progress reports as they come.

I have been contact with Dr. Mindy Lipson-Aisen, the national director for The United Cerebral Palsy Foundation in Washington D.C. She would like to see a study begin with this treatment and has offered grant opportunities. Easter Seals Dupage has been very accommodating with Ryan’s needs. Based on conversations with them it appears that additional funding would be available.

We owe our thanks to the mice and men that helped to get us this far. But it’s not about them. It’s about the children and others that may benefit. Educating the public on cord blood banking options is paramount. The treatment accessibility must be expanded. Funding research for children with neurological disorders that have access to their cord blood in either a private or public bank would be a low risk, high yield and yes, ethical place to start. Ryan and others should not be referred to as “an anecdotal response”. As a society, we all deserve better than that.

With an autologous transplant, the worst thing that can happen is that nothing happens. A simple transfusion should not be this hard. But it is. Access to this treatment needs to be available to the children in need.

My family and I thank you for your time this evening and I look forward to answering any questions you may have during the reception.