Friday, September 28, 2007

No More Darkness

Sun-herald.comBy Jason WitzStem-cell treatments already producing changes in Port Charlotte toddler, who is legally blindCameron Petersen can't sit still.The 19-month-old Port Charlotte toddler crawls toward objects with a new sense of curiosity. His legal blindness seems to be fading with each day in China, as he explores the foreign surroundings of the room."My son says he's like a little monkey," said Cameron's grandmother, Carol Petersen, who has been communicating with the family by phone.Earlier this month, Cameron traveled to China with his parents, Melissa VanGorp and Zachery Petersen, as part of a case study to treat his blindness with stem cells.Cameron was diagnosed with optic nerve hypoplasia, a leading cause of blindness in children. The condition causes underdevelopment of the optic nerve and can lead to permanent blindness. Doctors told Cameron's parents nothing could be done.But the family never gave up hope.They found Stem Cells China, a research facility which has successfully infused stem cells into patients suffering from numerous disabilities and diseases.Family members raised about $20,000 this summer to help fund the trip to China and for the treatment.The procedure, which isn't available in America, transplanted harvested umbilical cord stem cells into Cameron.Stem cells can transform into specialized cells with specific functions, such as repair of Cameron's optic nerves.Treatment consisted of four total stem-cell infusions to Cameron's arm and the lumbar region of his spine. It didn't take long to notice a change.Carol Petersen said Cameron's energy level increased following his first treatment on Aug. 10. He also seemed healthier.Petersen said Cameron used to have a high temperature every other day.By the third treatment, Cameron was standing on his own and crawling toward objects -- something he couldn't do before. In the past, Cameron would feel objects such as his toys by putting them against his lips and face."He's exploring everything," Petersen said. "I am just so overjoyed."Cameron is one of five children to undergo stem-cell treatment for optic nerve hypoplasia. Among those treated by Stem Cells China was a child from Missouri this summer, along with a girl from Romania. Both have shown incredible progress with vision.Cameron will return early Wednesday morning with his parents.Peterson said she hopes to raise awareness about stem-cell research, since it remains a controversial subject in the United States."If it's in our power to do this to help people, why can't we?" she said.

Braille Institute VP: Cameron May be a Door Opener for the Future

Sun-herald.comBy Dawn KrebsThe news of an 18-month-old boy slowly regaining his eyesight has rippled across Southwest Florida."That makes four children that we know of that have received this treatment who can see now," stated Chuck Johnson, vice president of The Braille Institute of Florida. The institute works in Southwest Florida to increase Braille literacy and encourage children with blindness and other learning disabilities to express their talents. "If Cameron is coming through that same exchange, he may be a door opener for the future."The legally blind Port Charlotte toddler was diagnosed with optic nerve hypoplasia, or a lack of development of the optic nerve, and traveled to China for stem-cell treatment the beginning of August."Hypoplasia comes from damage to the optic nerve," Johnson said. "It's not strong enough to carry the light. The only thing that can help your sight is to undergo this type of treatment. His optic nerve was asleep; now it's getting a new shock. This new shock is the stem cells that are from the umbilical cord."According to Eric Stockley, of the Charlotte County Health Department, Cameron received a series of five injections of umbilical cord stem cells directly through his spine into the fluid that surrounds the brain. These are cells harvested from umbilical cord blood and not the embryonic cells that are at the center of controversy right now.Each injection delivers more than 10 million stem cells in combination with additional neuron growth factor cells. These cells guide the stem cells to the damaged nerve cells, which in Cameron's case is the optic nerve. Once the stem cells have located the damaged nerve they begin to rejuvenate and replace and repair the damage.After he returns to the United States, Cameron will continue to take treatments for another year or more. Also, he will have to undergo three months of intensive therapy to stimulate his sight. Also, for 12 months, Cameron must spend some time every day, five days a week, in a hyperbaric oxygen decompression unit. This is similar to what divers with the bends must undergo, but for Cameron, this therapy will encourage armature stem-cell growth.What will this small success mean for future research?"He (Cameron) is coming from scratch," Johnson said. "If he's getting stronger, it's because of these treatments. It's exciting news for us. We have a winning key on our hands, and the government is going to hear about it."

Tuesday, September 25, 2007

Helping Other Children See

Sun-heraldBy Jason Witz Grandmother of Cameron Petersen wants to get government-funded umbilical cord blood bank to serve community Carol Petersen wants to help other children see.But it's going to take a lot of legwork and signatures.The Port Charlotte resident hopes to raise awareness about umbilical cord stem-cell research using her grandson's story of sight.Cameron Petersen, a 20-month toddler who is legally blind, has made significant progress since undergoing a stem-cell infusion in China last month.Now, the goal is to secure government funding to open a public umbilical cord blood bank in Charlotte County, providing other children with hope. The petition has already received hundreds of signatures."I'm trying to help all the other Cameron Petersens," his grandmother said.Cameron suffers from optic nerve hypoplasia, a leading cause of blindness in children. The condition causes underdevelopment of the optic nerve and can lead to permanent blindness.Doctors told Cameron's parents nothing could be done. The family began to research other options and found Stem Cells China, a research facility which has successfully infused stem cells into patients with numerous disabilities and diseases.Cameron traveled to China with his parents, Melissa VanGorp and Zachery Petersen, last month as part of a case study to treat his blindness with stem cells. These cells can develop into specialized cells and even repair tissue. The procedure, which isn't available in the United States, transplanted harvested umbilical cord stem cells into Cameron. It consisted of four stem-cell infusions to Cameron's arm and the lumbar region of his spine.By the third treatment, Cameron was standing on his own and crawling toward objects -- something he couldn't do before. Now, doctors say he can see about 1 1/2 feet, or to his knees.Since the treatment, Petersen said many families have contacted her about getting their children help.Petersen said the United States has several cord blood bank facilities, but most are privately operated and expensive."People shouldn't have to go to China for treatment," she said.The public, medical community and state and local government agencies are invited to learn about umbilical stem-cell research Nov. 3 at Gilchrist Park.The event will feature the success stories of Cameron and a girl from Missouri who can now see. Kirshner Ross-Vaden, one of the leading experts on umbilical stem-cell treatments, will discuss their stories.Petersen said she hopes to raise awareness about the petition to start a government-funded cord blood bank."If enough people want it in Charlotte County, we will make it happen," she said. "I'm not going to stop until I get it."For more information on Cameron's story or to sign a petition, visit www.cameronsmiracleofsight.com. Donations may also be made to the "Cameron Lee Petersen Trust" at any Bank of America. The money will help fund a hyperbaric oxygen chamber needed for Cameron's continued recovery.

Friday, September 21, 2007

Umbilical Cord Stem Cells Offer Hope for 10 year old Austin

September 21, 07
Umbilical Cord Stem Cells Offer Hope for 10-year-old Austin



Bolivar Herald - Free PressBy Becky Baker May see for first time in short lifeA young Bolivar boy hopes to be able to distinguish light from dark as well as make out faces, something he has never been able to do since birth. Austin Anderson, 10, has born with optic nerve hypoplasia, which is a congenital disorder that is caused by the underdevelopment of the optic nerve. He also suffers from septo-optic dysplasia, which is another birth defect that is related to growth hormone deficiency, and he is mildly autistic.Yet, Austin is a happy little boy, according to his mom, Kim Lightwine May. At age 10, though, he only weighs 57 pounds and is at the 10th percentile on the height and
weight chart most pediatricians use to chart growth for kids.He has attended Missouri School for the Blind in St. Louis since 2004. "He has learned a lot of things that help to prepare him for the best quality of life he can have," May
said. Before attending MSB, he attended Bolivar Center for the Developmentally Disabled for two years."Austin loves music, water and to sit in a lawn chair while others are busy doing their things," May said. "He also loves to lay on Mimi's trampoline."New hope for AustinAfter 10 years of never being able to see, there may be hope for Austin to gain some sort of eyesight. Recent stem-cell transplants from umbilical cords in China have been giving hope to families similar to his. These stem cells are taken directly from umbilical cords after babies are born, not those produced in laboratories or taken from embryos or fetuses across the world.The Joplin Globe featured a story on Sept. 2, the exact day Rylea Barlett of Webb City was born six years ago. She was born blind with the same birth defect as Austin. She is now experiencing success with the stem cell transplants she received in July in China. She can now make out the "big E" at the top of the eye chart and can point out the three points, make out the faces of her mother, father, big brother and little sister."I can't wait for the day when Austin can finally see his mama's face," May said.The transplant procedures consist of one IV transplant and three spinal infusions, costing around $25,000 for the four transplants. Because the FDA has not approved the procedure, it is not available in the United States. But doctors at the Beike Clinic in Hangzhou, China, offered this experimental treatment to the Barlett family. Rylea was the first person with the same diagnosis as Austin's to have this procedure, and she has seen results within weeks of treatment, while it was first believed to take three to six months to see any improvements.Not only should these transplants help with Austin's vision and his growth deficiency but also his autism and very likely his developmental delays.Ever since May found out about Rylea's story from a friend who recently saw it in a local daily newspaper, she has been in touch with her mother on almost a daily basis, and they were able to meet in Springfield this past weekend. It is her hope to take Rylea back to China in March 2008 for another round of transplants for Rylea, and May hopes to be ready to take her son at the same time.For more information on the procedures, visit Rylea's Web site at NoMoreDarkness.com or StemCellsChina.com. You may also visit Austin's Web page at HopeForAustin.com. There is a fund set up for Austin's transplants and trip to China at US Bank, attn. Robin Sawyer, in Bolivar under his name, the Hope For Austin Fund or his mom's name.

Wednesday, September 5, 2007

In our view: Hope Where None Existed

Joplin GlobleNeed evidence that stem-cell research can produce miraculous results? Six-year-old Rylea Barlett, of Webb City, was born blind, with no hope of ever seeing. But her mother refused to give up, taking her to various specialists in the United States before finally trying stem-cell transplants from umbilical cords at a hospital in Hangzhou, China. After three spinal stem-cell transplants and two IV transplants, Rylea reacts to light, has seen the faces of her mother, brother and sister, and was able to detect a big “E” on the chart across the room in the office of Dr. Larry Brothers, her Joplin optometrist.Her vision is only 20/400. But that may be only the beginning. Rylea is supposed to return to Hangzhou for further stem-cell transplants in March. Although she may never see perfectly, as her mother, Dawn Barlett, said: “You continue to build on what you have gained.”Rylea’s experience offers hope to others who have been blind from birth or perhaps even were blinded in an accident or by a disease. The use of stem cells from umbilical cords has generated new optical nerve cells that allow Rylea to see.A man in Sikeston had stem-cell transplants in the Chinese hospital with the hope of repairing a spinal-cord injury that left him paralyzed from the waist down. He still can’t walk, but he is able to move his toes. No one can guarantee that stem-cell transplants, including the somatic cell nuclear transplants approved for research in Missouri by voters last year, will come up with cures or even ameliorate the ravages of debilitating disease or injury. But the research offers hope where little or none exists. Opponents of stem-cell research argue that the somatic cell nuclear transfer procedure amounts to cloning, despite the language in the amendment written into Missouri’s Constitution last year prohibiting human procreation by cloning, and want to put a stop to it through a grass-roots initiative petition campaign.The research in Missouri already is being hampered by an unstable climate being created by those who are continuing the efforts to overturn or thwart the purpose of the constitutional amendment. Plans for expanding this vital research reportedly have slowed. That is a shame. We don’t fault those who follow their consciences, but we think that they are caught in between rapid advances in medical science that have outpaced medical ethics and public understanding. Rylea is dramatic proof that research into the use of stem cells from the umbilical cord can work. That same hope exists for sufferers of other life-threatening, quality-of-life-dampening injuries and diseases. Their best hope is somatic cell nuclear transfer research here in Missouri, not in a faraway land or city like Hangzhou, China.

Monday, September 3, 2007

Stem-cell Transplants Provide Hope for Family of Blind Girl

Joplin Globe“This is totally uncharted territory. We don’t know what to expect. We don’t know what the end result will be and whether she will have some functional vision. But two months ago she had nothing, and now she can see light. That’s an incredible journey for one small person. It’s a miracle.”The diagnosisAfter Rylea was born, she had a few medical issues, including a blood-sugar problem, but it did not appear to be serious.“We did not know anything was wrong until she was 4 months old,” Barlett said. “It was in January of 2002. A doctor noticed she wasn’t tracking with her eyes. He told us to make an appointment with a pediatric opthamologist.“We thought she had a lazy eye. We expected the problem to be minimal. The doctor did an exam. A few minutes later, we are told she is blind and there is nothing we can do to fix it.” Stunned by the news, she sought second, third and fourth opinions.“It was the same diagnosis everywhere we went,” she said. “That’s when we took on this whole new world. We were still hopeful, though this was our worst experience with anything bad. We had a perfect baby girl. She was our princess, and something was wrong that no one could fix.”They made trips to Children’s Mercy Hospital in Kansas City and other places in search of hope.“There were a lot of learning experiences,” Barlett said. “We never gave up. Her being blind was never OK.”Eventually, Rylea had seen all of the eye specialists her family could find. Brothers continued to see Rylea to check on the health of her eyes, but there was nothing he could do for her.Brothers and the girl’s pediatrician, Dr. Fred Wheeler, of Joplin, were two of the only people to hold out hope for Rylea “when no one else did,” Barlett said. “I will never forget what Dr. Wheeler said to me when I talked to him about the stem-cell transplants. He said, ‘If there is an answer, this is it.’”After encountering one wall after another, Barlett became frustrated, but she continued her search on the Internet for promising treatments outside the United States.“I looked for help in India, Thailand and throughout the world — places where they don’t have the FDA (U.S. Food and Drug Administration) to hold back research,” she said. “I found this place in China that does umbilical stem-cell transplants.”‘I wanted to know everything’She sent a brief description of her daughter’s condition to the research program in China.“I knew there was no cure, but at least they were doing research,” Barlett said. “I felt there was the possibility of potential improvement for her. I got a response back from a lady in the United States. She was their contact in this country.“In her letter, she said they had never treated anyone for this condition, but felt there was a significant chance for improvement. For a week to two weeks, I prayed about it. I am not one for false hope. I did not want anything like that.”She put together three pages of questions for her contact.“I went down the list of possible side effects,” she said. “Stem cells can cause tumors. I was concerned about that. But, umbilical-cord stem cells have no antigen markers like embryonic stem cells. Umbilical-cord stem cells, because of that, can help develop brain and nerve cells — gray matter — but not other things. I thought, ‘Maybe they can develop optic-nerve cells.’“I wanted to know how they did it. Did it involve surgery? I was told she would have intravenous injections and spinal infusions. After weighing the pros and cons, I thought we should try. The only possible side effect was spinal headaches after the procedures. Of course, there was always a possibility of infection.”Barlett found a telephone number for a man in Sikeston who had a spinal-cord injury and had gone to the same Chinese program for stem-cell treatments.“I wanted to know everything about it, including where it was done and the environment there,” she said. “Was the country itself safe? I have never left the United States. This man told me he could not walk, that he was paralyzed from the waist down. When he left there, he had sweating in his legs and could move his toes for the first time. He still wasn’t able to walk, but some small things had improved. That was the confirmation I needed.”On Jan. 1, Barlett created a Web site telling her daughter’s story. The fund raising for the trip to China began. Donation cans were set up in convenience stores. A benefit golf tournament was held. A family member in Chicago organized a union benefit. One man donated 120,000 airline miles for the round-trip tickets.The journeyThey flew from Chicago to Shanghai. It was a 15-hour flight.“We went to Hangzhou, which is a three- to four-hour drive from Shanghai,” Barlett said. “I kept thinking, ‘What are we doing?’ Every billboard was in Chinese. People were working in rice fields. What are we doing here? There was the culture shock part of it, but I was not scared. It seemed that every door we encountered opened.”They stayed in a hotel that was four blocks from the hospital.“It was a modern building, but the hospital was very different from what we are used to,” she said. “There was no HIPAA (medical privacy act). Lots of people were in your business. They called Rylea ‘Princess’ because to them, she looked like a Barbie doll. She got hugs and kisses because she stood out with her long, blondish-brown hair. I never felt like these people were put out. They were very willing to help.”The arrived on July 1.“Her first stem-cell transplant was done by IV on July 4,” Barlett said. “It was symbolic for us because it was the beginning of her independence.“They said it would be three to six months before we would see any changes. It takes that much time for stem cells to mature and become connectors. A week later, on July 11, she started responding to light. Before, when you put a penlight to her eyes, her pupils would not contract when light was shined in them.“When the doctor shined the light in her eyes, she shut her eyes and turned away. The doctor looked at me. We looked at each other. Everyone was completely silent. In broken English, the doctor says, ‘Congratulations.’ I started bawling.”Rylea had three spinal transplants and another IV transplant before they left the hospital. Each transplant involved 10 million cells. The trip and treatments were financed by nearly $40,000 in donations.After they returned to the United States on July 30, they met with Brothers so he could assess the girl’s progress.“We were hoping she would give us some reaction to light,” Barlett said. “She not only saw the light, she saw a chart across the room with a big ‘E’ on it. He determined that she has 20/400 vision.“I will never forget Dr. Brothers saying: ‘We have never had numbers. Do you realize we have never had numbers?’ He was so excited.”The plan now is to go back to China in March for another round of stem-cell transplants.“She will not get 100 percent vision from this, but you continue to build on what you have gained,” Barlett said.Now that the whirlwind trip to China is over, life is returning to normal for Rylea and her sister, Kyra, 4, and brother, Zack, 12. But the trip has opened a whole new dimension for their mother.“The parents of children with optic-nerve hypoplasia have seen her Web site and the progress she has made, and we’re getting thousands and thousands of e-mails, comments and phone calls,” Barlett said.“You want to help every one of them. You want to offer families hope because we know what it is like to not have any hope.”