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| The Gift of Sight: A Mother’s Hope for Her Daughter |
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| Optic Nerve Hypoplasia | |||
| Wednesday, 29 October 2008 17:17 | |||
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Source: Wenatchee World  By Rick Steigmeyer WENATCHEE — Corrine Sweet was 5 months old before her mother Karen Poellnitz knew for sure her baby was blind or mostly blind. It was nearly another year before Poellnitz gained a glimmer of hope that a cure was possible. Now the Wenatchee single mother of two young children is making a desperate move to raise more than $100,000, the sum she has been told it could take for her now 17-month-old daughter to undergo stem cell transplant treatments in China. The procedure is not approved in the United States, and stateside doctors are skeptical of its success abroad. It’s not covered by private insurance, Medicare or Medicaid. Poellnitz, who has worked as a poker dealer since graduating Eastmont High School in 2004, thinks the stakes are high, but it’s a chance worth taking to win her daughter the prize of sight. “It’s a steep goal, a little overwhelming,” says Poellnitz, 25. “But we want to stay positive and say we can do this. She’s worth every penny.” Poellnitz knows what such a chance is worth. She was diagnosed with cancer — non-Hodgkin’s lymphoma — at age 3. Doctors told her parents she had just days to live if she didn’t undergo huge dosages of radiation and chemotherapy. She did — at Children’s Hospital and Regional Medical Center in Seattle — and survived. Her parents took the only chance they had to save their daughter and gave her the gift of life, Poellnitz says. Now Poellnitz wants to give her daughter every chance she can to see. Doctors told Poellnitz several years ago that she would never have children due to the massive doses of radiation she received as a child. Her daughter Gwen, born in 2002, proved them wrong. Poellnitz says she wants Rinney, as she affectionately calls her younger daughter, to be as healthy and perfect as her first child. Poellnitz and her mother Barbara Binschus had noticed a couple months after Rinney was born that she didn’t appear to be tracking movement with her eyes. Doctors told them not to worry. Many babies don’t track until they’re 6 months old. Last November, Rinney twice stopped breathing. Twice she was rushed by ambulance to Central Washington Hospital’s emergency room. The second time, she stayed in the hospital four days for tests to determine the cause of the problem. On Thanksgiving day, Poellnitz first heard about optic nerve hypoplasia and septo-optic dysplasia. The terms have since become a part of her daily life. Rinney was transported to Children’s Hospital in Seattle to undergo her first MRI on Nov. 29. The tests confirmed the diagnosis made in Wenatchee. Optic nerve hypoplasia is a birth defect that results in underdevelopment of the optic nerve. The condition is related to septo-optic dysplasia, which causes a deficiency of hormones produced by the pituitary gland and abnormal development of the hypothalamus and midline portions of the brain. The conditions are the leading cause of visual impairment in children. Whether Rinney is completely blind is still a matter of discussion. Doctors say she may have very limited vision, but until she’s old enough to say, no one knows for sure. Although her condition can also result in mental retardation, doctors have told Poellnitz that Rinney shows no signs of that. She does suffer from occasional seizures and a condition known as diabetes insipidus, which affects her body’s ability to process water. “She’s a very happy baby,” says Poellnitz. “She just wants her mommy. She’s a snuggler.” Poellnitz says Rinney’s father isn’t involved with raising his daughter. What Poellnitz wants is for her daughter to see like other children. Doctors have told her there is no cure for the birth defects. There is no surgery or medicine available other than hormone replacement to treat lesser problems caused by the abnormal functions of the pituitary gland. Poellnitz says doctors have told her there is no way Rinney’s vision will ever improve. Accepting that as fact, Poellnitz began taking the girl to physical therapists who have helped her learn to eat, play, crawl and now walk. She’s already been introduced to Braille. But this summer Poellnitz learned maybe more could be done. She read about the successes of stem cell treatment in China by Beike Biotechnology, which is supported by Beijing University, Hong Kong University of Science and Technology and the China State National Fund. In operation since 1999, the company has performed stem cell treatment on more than 3,000 patients with a variety of conditions at 24 Chinese hospitals. About 15 patients have been treated for optic nerve hypoplasia with improved vision for all of them, according the company’s Web information. Several stories have also appeared in the U.S. press about children whose sight has improved after the treatment. Poellnitz says local doctors are also skeptical but haven’t discouraged her from seeking the treatment. She’s talked to several parents who have taken their children to China for the treatments and all reported positive outcomes with some improvement in eyesight. “Of course I have fears, but I think the benefits outweigh the concerns,” she says. “I need to know I’ve done everything I could do.” Poellnitz recently learned Rinney will receive a $25,000 donation from the Kingston Memorial Fund made possible through Wenatchee Lions Clubs. The donation is contingent on Poellnitz’s ability to raise the rest of the money needed from other contributions. A benefit last Saturday failed to raise much, but other benefits are planned for the future. Donations can be made and more information about Rinney and the treatment can be found at www.sweetmiracle.org. Donations can also be made to the Sweet Miracle account at any U.S. Bank.
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| Last Updated on Tuesday, 30 December 2008 00:28 |