Braille Institute's Blind Poster Child to Lead Local Vision Awareness Rally

Anony MouseProvided by the Winning Kids Club PUNTA GORDA — By the time 18-month-old Cameron Petersen leaves for China next month, he will have already impacted the future of Florida's blind children. The Port Charlotte toddler's first public appearance is at the press conference and Vision Awareness Rally to be held in conjunction with the Beginning Braille Summer Camp in Punta Gorda. Earlier this week, Cameron was named the poster child for the Braille Institute of Florida, who is sponsoring the camp and rally on Tuesday at the Bayfront YMCA Center, 750 W. Retta Esplanade, Punta Gorda. The public is invited, and both events are free, with tax-deductible donations accepted. Camp begins at 9 a.m. with bag lunch at noon. The rally in the parking lot starts at 11 a.m. Congressman John Lewis, a strong supporter of independence for the blind, is expected to travel to Punta Gorda and speak on behalf of blind children. Other invited guests are Dr. Marc Maurer, president of the National Federation of the Blind; John E. Jordan, practicing blind attorney from Orlando, as well as the United States' lead nurse in the stem cell treatment to correct some forms of blindness. Cameron was diagnosed with optic nerve hypoplasia, an underdevelopment of the optic nerve, during pregnancy. It is one of the three most common causes of visual impairment in children. He is traveling to China because there is currently no treatment in the United States to help Cameron. Studies show that vision disorders are the most prevalent handicapping condition for a child, because not being able to see alters how a child understands and functions in the world, and affects their emotional, neurological and physical development. According to the Braille Institute, in Southwest Florida alone, there are about 10,000 5-year-olds who have not had an eye exam; and 180,000 children failed an eye test, yet were not referred to an eye specialist. On the educational spectrum, even when a child is diagnosed and treated for blindness, only 6 percent ever learn to read Braille. The other 94 percent remain illiterate their entire lives. That's why the Braille Institute is on an intense campaign to teach beginning Braille and to raise money to purchase a mobile coach. According to the institute's president, Gail Ghigna-Hallas, they are in the process of negotiating for the mobile unit, which will be called "Good Bumps on a Roll," that would travel throughout Southwest Florida to conduct free eye exams for children. "We will offer free eye exams to children at birth, 6 months of age, and again at 2 years and 5 years," says Ghigna-Hallas, whose is a registered nurse and holds a doctorate in education and psychology, with an extensive advocacy background for people with disabilities, especially children. An injury three years ago took the sight in Ghigna-Hallas' left eye. "To promote vision education and blindness prevention among the public, (the mobile coach) will also contain a braille library and museum, braille book/toy store, and a classroom to teach beginning braille and guitar to blind children, as well as employ blind individuals," Ghigna-Hallas said. The Braille Institute currently operates in Lee, Charlotte, Collier and Hendry counties, and has received significant donations toward the project and grants from Suncoast Schools Federal Credit Union, Duxbury Braille-Writing Systems, Enabling Technologies, local individuals and businesses, and continues to write grants to the Florida Department of Education, Division of Blind Services, Zonta Club of Bonita Springs, Kiwanis Club and others, until they have raised the $500,000 necessary to purchase the motor coach and get it up and running. Donations will also go towards the cost of Cameron's treatment and expenses. The Braille Institute of Florida is a United Way agency and division of the Winning Kids Club, a nonprofit 501(c)(3) tax-exempt organization offering children in Southwest Florida of all abilities and backgrounds instruction in beginning guitar, song writing, music, art, creative writing and rollerskating, as well as braille literacy and guitar lessons for blind and visually impaired children and braille for sighted slow readers to increase reading and other academic scores.

Trail Ride Fundraiser Planned for Local Toddler

Sun Intern By Teddi Thosath The tickets are purchased, about $20,000 has been raised, and for 18-month old Cameron Petersen's parents, the hope of seeing again is just a month and thousands of miles away. Cameron Petersen is a Port Charlotte tot who is legally blind due to Optic Nerve Hypoplasia, and is scheduled to fly to China on Aug. 6 for a case study to undergo umbilical cord stem cell surgery. Petersen's parents, Melissa VanGorp and Zachery Petersen, as well as his grandparents and the lead medical consultant with Stem Cells China, are all optimistic that the procedure will give sight back to the blind toddler. After about a month and a half of fundraising, the Petersen family has raised about $20,000 for the flight and surgery, about one-fifth of their goal. Michael Rudden, vice president of the Punta Gorda Horseman's Association, has organized a sponsored trail ride on July 28 to help raise money for Cameron. The rides starts at 9 a.m., with three different rides planned — the first one lasting an hour, the second two hours, and the third three hours. Trails will be marked for the rides, and all riders should be back by noon to meet the family. The ride is scheduled to take place at Deep Creek Reserve, Peace River Street, DeSoto County. A number of prizes are to be given away during the event, Rudden said, and everyone is invited. Nonsponsored riders over the age of 18 are asked to pay a $30 donation, and the request for those 17 years or younger is $15. For more information, call 941-639-4107 or e-mail
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"We are still chugging along, and the actual stem-cell part of it is now covered," Carol Petersen, Cameron's grandmother, said earlier this month. "He has his ups and downs. But I just feel really positive about all this." The treatment alone costs $15,000. An additional $10,000 to $20,000 is needed for a Hyperbaric Oxygen Treatment chamber once Cameron returns home. The family is estimating $100,000 for the total expenses. When Cameron was diagnosed with ONH, a leading cause of blindness in children that also interfered with his pituitary gland, his parent's were told there were no treatments available. However, after researching online they found Stem Cells China, where they have successfully infused stem cells into patients suffering from numerous other diseases and disabilities. Stem Cells China has established a 98 percent improvement rate with patients undergoing treatment for other disabilities, according to the organization's Web site. This procedure, which is not available in America, takes harvested umbilical cord stem cells and, in a very technical process, the stem cells will then be transplanted into Cameron. Stem cells are unspecialized cells that can replenish their numbers for long periods through cell division. Also, after receiving certain chemical signals, the cells can differentiate or transform into specialized cells with specific functions, according to Stem Cells China. The study is the first of its kind for ONH patients. The treatment includes four stem cell transfusions of 10 to 15 million stem cells each, Melissa VanGorp said. With each stem cell transplant, they also give the patient a transfusion of "neural growth factors" to encourage the stem cells to find their targets and transform into new neurons. After the treatments, Cameron will undergo intense daily therapy programs, which range from speech therapy to a type of Chinese massage, to promote the success of the procedure. "Now, we have the technology to help these children to see," Kirshner Ross-Vaden, the vice president of foreign patient relations and the lead medical consultant with Stem Cells China, said. "They don't have to go through their life blind. (But) no one knows for sure, someone has to go first. These kids are the pioneers. They may very well pave the way for all of the children of the future." Cameron is one of five children to undergo this treatment for ONH patients. Ross-Vaden, a registered nurse and a former Air Force medic, said Cameron will probably undergo lumbar puncture treatments, which inject the stem cells directly into the cerebral spinal fluid. The first couple of days, however, will be strictly for evaluations and tests. She said that, assuming everything with the medical section looks good, they will then proceed with the transplants. They are hoping that the stem cells will mix with Cameron's cerebral optic nerves and repair them. Ross-Vaden, who was in Chicago on Friday, said they are currently providing treatments to another child from the United States, and last month performed the procedure on a girl from Romania. "Right now the girl from Romaina's mom said she is responding more visually, but it's too soon to tell," Ross-Vaden said. She stressed that the procedures are safe and they only use umbilical cord stem cells, which have been used in this type of treatment for 20 years. Ross-Vaden believes the treatments are "extraordinarily safe," and has even undergone the treatment herself for a medical problem. "These kids are the first to come through with a primary diagnosis (of ONH). For the entire world, this has (previously) been called an untreatable diagnosis," she said. "I feel really really strongly that, historically, we have been wrong." Ross-Vaden first learned about stem cell treatments when her own son had a servere brain injury. Even with her medical research background, she found it hard to find reliable information to help her son. At the time, she took her son to Mexico for treatments. Unfortunately, she lost her son, but continued her work. Stem Cells China offered her a position to help expand their programs for children. For more about the treatment, visit www.stemcellchina.com. "This is a monumental step in medicine," Ross-Vaden said. "I wouldn't be doing this if I didn't think it would be possible."