A Voice for the Voiceless

Smiling and actively enjoying a TV show on Nickelodeon, five-year-old Maiya Novitsky has overcome many obstacles in her short life to be able to enjoy weekday afternoon cartoons at home. Maiya was five-days-old when she was abandoned on the side of a road in Nanhai, China.

Her adoptive father, Scott Novitsky, endured a long and arduous process to bring her to America and adopt her, only to find out a year after Maiya joined the family that she suffered from Rett Syndrome, a severe developmental disorder. “We never anticipated this, we thought we were getting a healthy girl,” Scott Novitsky said. “Life happens.”

Many scientists point to embryonic stem cell research as a hope for curing many different diseases. Novitsky, an active advocate of Rett research and public awareness, thinks it's not right to destroy human life to research a possible cure to any disease. When first faced with finding treatment for Maiya, Scott was unsure about whether he could support embryonic stem cell research. After careful examination, he ultimately decided that he could not support any research that results in the ending of a human life, no matter how small that human life is. “The parents of children with conditions that are thrown into situations like this, I think it's unfair to have them decide between research options,” he said. “Decisions should not be based on emotions; you could make a lot of wrong choices.”

His decision had a very significant impact on his work. It forced him to evaluate his relationship with the International Rett Syndrome Foundation. While the foundation does not fund any research using human embryos at this time, they have not made a definitive decision on the issue for the future according to Scott. “I had to ask myself, am I raising money for an organization that's using embryonic stem cell research?” he said. Fortunately, scientists have been making breakthroughs with treating the disease in mice without using human embryos.

A February 8 press release by the Rett Syndrome Research Foundation claimed a reversal of symptoms in mice undergoing drug treatments. Scott argues that researchers should focus more attention and money on treatment methods that don't involve harming human life. He believes adult stem cells and drug therapies can hold the key to treating other serious conditions. “I have to believe that's the case with a lot of diseases out there,” he said.

Scott was also very encouraged by the news in November that researchers from Japan and Wisconsin were able to reprogram adult skin cells to perform the same way as embryonic stem cells. This research would avoid many ethical and practical concerns since your own skin could be used to treat yourself. Such a plentiful supply would also avoid human cloning as a means to obtain enough stem cells for experimentation and treatments. Scott said that we are already surpassing with adult stem cells what they wanted to do years ago with human embryo-destructive research which is why he doesn't understand why many scientists don't pursue the new ethical process instead of continuing to advocate killing human embryos for research. He also questions why those scientists can't recognize that the human embryo is a living, unique individual. “What would those scientists who argue 16 cells aren't life say if those cells were found on Mars? They wouldn't say 'we have found 16 cells of mush,' they would say 'we have found life!'”

There are many parallels between Maiya's struggle and the struggle for allowing human embryos to live according to Scott. He said we should protect all people, especially those who have no voice to do it themselves, including human embryos. “My daughter can't speak for herself,” he said. “Somebody has got to speak for them.”

Rett Syndrome is not a widely known disease. First noticed in 1954, the disease did not become a mainstream medical concern until 1983, according to the International Rett Syndrome Foundation. Novitsky said even local doctors aren't familiar with the disease. “We've made countless trips to the ER with problems and we'll have doctors come in and admit they just looked up Rett Syndrome online,” he said.

The syndrome is an almost exclusively female disease, caused by a single gene mutation. Children stricken with it appear to develop normally at first, but usually from six to 18 months after birth their motor skills and speech regress, to the point where they no longer talk and lose any purposeful use of their hands. There are usually many other symptoms and complications including slowed head growth and seizures. Most children require constant daily assistance. People with Rett Syndrome typically live well into adulthood, with an average life expectancy of 47 years according to the International Rett Syndrome Foundation. They tend to enjoy interaction with other people, and learn to communicate with their eyes.“Girls with Rett are very flirty,” Scott adds.

Maiya's journey to America in 2003 was very difficult. Scott and his family spent 3 years working through the adoption process before they could bring Maiya home. The adoption process with China was fraught with difficulties over the SARS scare, the September 11 attacks and the 2001 Hainan Island spy plane incident. “Days before we were supposed to travel, she was in a hot zone of SARS,” Scott said. “We were one of the last groups by a day or two to make it to China. We were really lucky to visit the orphanage.”

They were told to expect developmental delays, but when Maiya began having trouble holding her hands up or sitting up, they knew there were serious problems. “She was literally like a newborn baby again,” Scott said. Scott, an employee of the City of Grand Rapids, lives in Walker with Maiya and his two other children, Mitchell and Lucas. Inspired by his daughter's condition, Scott has become an advocate for Rett Syndrome awareness. He is currently working with State Rep. Dave Hildenbrand on a bill to proclaim the first week of October as “Rett Syndrome Awareness Week.” He also has worked with International Rett Syndrome Foundation, and has produced a website among other things. “I wrote a whole book on it,” Scott said about his unpublished work on the disease.

Scott said that Maiya's life has been wonderful in affecting so many people in so short a time. She has participated in research studies, been featured in many stories bringing awareness about Rett Syndrome, and has been a positive force in the lives of the Novitsky family. Scott said it was amazing how one girl abandoned on the streets of China can touch so many lives. “Maiya is a teacher, she's teaching a lot of people,” he said. “She's taught me to stand up for her, to go down to Lansing. She's taught her brothers compassion, she's just meant so much.”

For more information and links to resources on Rett Syndrome, visit Scott and Maiya's webpage at www.mysilentangel.com. 

Cures Without Killing

In September 1997, Carolyn Curtis' life was turned upside down. She had been diagnosed with breast cancer. Doctors were giving her a fifty-fifty chance to live. “I was very young and just shell-shocked,” Carolyn said. “It was like a kick in the gut for my family.”

Carolyn Curtis' life was saved by treatment including her own adult stem cells. Many years later, she firmly believes that embryonic stem cells are the wrong choice for people seeking cures to breast cancer and other diseases and conditions. Adult stem cells were treating Carolyn and other patients like her in 1997.

Embryonic stem cells still have not been approved by the Food and Drug Administration for human clinical trials. The first human embryonic stem cell lines were produced in November 1998. Carolyn points out that though embryonic stem cell research was beginning to be seriously debated and considered soon after her treatment, it has yet to treat anyone, while adult stem cell treatments are ongoing.

“There has been a big push for embryonic stem cell research,” she said. “But it still hasn't amounted to anything.” In addition, Carolyn said she thinks it is wrong to take human lives for medical research, even if it were to result in treatments for others. The only way to obtain human embryonic stem cells is to kill an embryo and extract the cells. “With four children of my own, it would have been like saying one of them would not have been born,” she said.

Carolyn's treatment was a long and hard process. Her breast cancer had spread to her lymph nodes, and required aggressive chemotherapy and radiation. After six months of chemotherapy, she opted for a treatment using her own stem cells. The month long treatment involved collecting stem cells from her blood through a process called apheresis, which is similar to dialysis. She then had high-dosage chemotherapy, which destroys cancer cells but also kills bone marrow cells and seriously drains the immune system.

Doctors then reintroduced her stem cells, which formed new bone marrow and replenished her blood and immune systems. Carolyn said the process was very difficult, especially the high-dose chemotherapy treatments. “You don't remember a lot of it, that's good,” she said. “I would do it again in a heartbeat. It's not pleasant, but I would do it again.”

A family member once asked Carolyn why she would not have used a treatment produced from embryonic stem cells (if it had ever existed), if it meant an easy and complete cure to her cancer. She said it still wouldn't be worth taking another human life to treat her. “Even if they promised a complete cure, it would never have been something I considered,” she said. “That would be totally against everything I believe in.”

Carolyn credits her parents and her husband, Cliff, for their wonderful help in taking care of her during her treatment. Almost eleven years later and in remission, Carolyn is doing very well with her husband and four children in Marshall, MI. “God had a lot of work for me to do,” she said. 

Safe and Ethical Stem Cell Source

Many people are nervous about giving blood. The thought of anything related to a needle is enough to make their hair stand on end. There is one way, however, to give a potentially life saving blood gift without suffering any anxiety.

"It's an easy thing," said Mary Sumners of Grand Rapids. "It's super easy to do. I don't usually give blood, so it was a great way to give something." This super easy thing is donating umbilical cord blood after childbirth. Cord blood is a rich source of adult stem cells.

According to Cryobanks International, a Florida cord blood bank, these cells can be used to treat over 75 health conditions including leukemias, anemias and lymphomas. It is particularly useful in bone marrow transplants, since the cord blood does not have to match a patient's tissue type as closely as donated bone marrow does according to the National Marrow Donor Program, which handles the national cord blood donor registry.

Donation involves the hospital sending the umbilical cord and placenta to cold storage after the birth. No extra surgical steps are taken with the mother or the baby. If a patient doesn't specify what to do, the umbilical cord and placenta are simply thrown away as medical waste. Mary points out cord blood is a readily available alternative to using human embryonic stem cells, which are obtained from killed human embryos.

"Why are we fighting about embryonic stem cell research when there are so many other ways to get stem cells? It's just so easy to do, you make one phone call and fill out some paperwork," she said. Mary and her husband Steve learned about it from the information their obstetrician gave them when Mary became pregnant. She said she called a cord blood bank, filled out some paperwork, and brought a kit with her when she was due for her c-section delivery of Gwen, who is now four-months-old. The hospital took care of the rest after the birth.

"I called West Michigan Blood Centers," Mary said. "They send a kit with everything the doctor needs and a medical history questionnaire. You just have to keep the kit until the birth. All I had to do was give the hospital the kit."

The National Marrow Donor Program recommends contacting cord blood banks at least a month before the due date. Mary recommended starting the process sooner, since she ran out of time with donating the cord blood of her two-year-old daughter Anna. "Make sure you call early and get it taken care of right away," Mary said. "If you don't know where you can call just talk to your doctor."

Mary said that many young people like her don't know about this. She complained that the obstetricians for both her daughters didn't mention the possibility of donation; she had to learn from literature tucked away in a packet of pregnancy information she received from her doctor.

"Why in the world would you not do it? A lot of people don't know," she said. "The media doesn't really talk about it." Mary said she would love if more people made decisions to donate cord blood, and said she wished more people knew about this potentially life-saving gift.

For more information on umbilical cord blood donation, visit the National Marrow Donation Program website at www.marrow.org.

Saved By Her Brother

Cousins, siblings, aunts and uncles are all blood relatives. Usually this is a metaphor about the strong bonds holding families together. For six-year-old Colleen, however, this is a fact that might have been the difference between life and death.

Colleen was diagnosed with sickle cell anemia, a serious blood disorder. Her first hospitalization was only eight months after her birth. Fortunately, her brother William was able to provide the cure to her condition. Her brother's blood is now literally hers as well. “By the grace of God and the extraordinary medical knowledge and skills of staff at Mott Hospital at the University of Michigan in Ann Arbor, our daughter Colleen is almost three years out of her bone marrow transplant and cured of sickle cell disease,” Colleen's adoptive mother, Susan Sweetman said.

Sickle cell anemia is a genetic condition where blood cells are shaped in a sickle like the letter “C,” rather than round and smooth. The irregular shape causes the blood cells to die faster than normal cells, resulting in anemia. The shape also causes the cells to stick in blood vessels. According to the Mayo Clinic, the disease can cause many complications including significant pain, stroke, swollen hands and feet, acute chest syndrome and organ damage.

Susan said her daughter suffered many of these complications, and was in the hospital on an almost monthly basis. Colleen was close to having a stroke and had a partially-collapsed lung before her third birthday. Because of damage to her spleen, she has dealt with many infections both before and after her transplant.

Susan, her husband, Mark, and Colleen's doctors decided that a bone marrow transplant from a compatible donor was the best hope for Colleen. Colleen has ten biological siblings and several were tested for compatibility. William, one of her three siblings adopted by the Sweetmans, provided the closest match. Colleen's transplant was September 2, 2005. The treatment process involved destroying Colleen's blood producing bone marrow with chemotherapy, and replacing it with adult stem cells taken from William's bone marrow.

“William followed his stem cell donation up to Colleen's room and watched the 'bag of red' drip into his sister,” Susan said. “We had been told he would likely need a transfusion yet other than taking a short nap, William was unaffected by the whole experience.” After spending significant time in the hospital, at home recovering and after several follow-up visits, Colleen is officially cured of sickle cell anemia, Susan said. Her brother's adult stem cells successfully replaced her bone marrow and have been producing healthy and normal blood cells.

Susan cautions that bone marrow transplants involve serious risks and might not be the best decision for every case of sickle cell anemia. “It's not for everybody,” she said. “It's a full five years for recovery. It really affects family life.” She also said parents facing medical problems with their children need to be active advocates for their children's needs. She said she once had to stand up to several doctors and nurses who wanted to discharge Colleen from the hospital because her tests looked fine, but Susan knew Colleen still was ill. “You have to be very proactive for your kid; you know your child the very best,” she said. “You have to speak up for what they need.”

Susan said Colleen has been doing just fine since the transplant. Colleen lives in Livonia with three of her siblings, and three of Susan and Mark's biological children. Susan said she just completed kindergarten and her first season of T-ball, and can do many things now she didn't once have the ability to do. “She goes swimming,” Susan said. “She couldn't do that before because of sickle cell.”

For more information on bone marrow donation, visit the National Marrow Donation Program website at www.marrow.org.