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Boy needs help getting to the Kushi Institute to help heal his ITP!
Hi,
Someone posted the following article at another macrobiotic discussion forum and I feel that it's something that many folks here might also want to know about it and possibly even offer some help: "HARDWICK - Sky Lloyd looks like a typical 13-year-old boy. He's not. He can't ride a bicycle. He can't play baseball. And he can't risk getting a paper cut. If he falls off his bike, if he gets hit by a baseball, if he cuts his finger opening an envelope, Sky could bleed to death. Sky has a rare and severe form of immune thrombocytopenia purpura - or ITP, for short - which means his body's immune system is fighting its own blood, destroying the platelets that allow blood to congeal. Most people have 140,000 to 400,000 such platelets; Sky has about 1,000. On a good day, he may have 4,000. So a paper cut won't clot and scab over. A bruise on the arm from a baseball won't change color and disappear; it will just get bigger and bigger and bigger as the blood continues to flow. A simple fall from a bicycle could cause massive internal bleeding. "We're always on the edge," his mother, Linda S. Lloyd, said recently as she sat on the couch in her family's cozy single-story home in Hardwick and talked about her son's illness. "It's the unknown," she said. "The `what ifs': What if this happens? What if that happens? A major trauma, a car accident, a bad fall is a major risk to his life. Any parent worries. I worry every minute." Sky's older brother, Zachary, 17, said he, too, worries about his brother. "You're always wondering what is safe to do," he said. "Maybe you shouldn't do this today. Maybe I can help you walk down the steps so you don't fall. Simple stuff." Sky, who also suffers from a mild form of Asperger's syndrome, likes watching basketball on television, particularly the University of Connecticut's women's team, and the Boston Red Sox. Asperger's syndrome is developmental disorder characterized by impairment in social interaction, resulting in restricted and repetitive patterns of behavior, interests and activities. The Lloyds first noticed something was wrong with their younger son when he was about 18 months old. He was covered in bruises and they didn't know why. They took him to the doctor, who told them their child had either leukemia or ITP. Mrs. Lloyd said her child likely contracted the illness when he received his immunization shot. The waiver every parent signs when a child is given the immunization shot warns that one in 30,000 children could be adversely affected. "You don't think about it," Mrs. Lloyd said, lamenting the seemingly routine visit to the doctor's office. "But when it's your son, it really, really, matters." >From age 2 to 6, Sky underwent more than 50 overnight visits to the fifth floor of UMass Memorial Medical Center - University Campus. Dana Lloyd would drive to Worcester to drop Linda and Zachary off at the hospital at 4 a.m. then drive to Northeast Foods in Auburn, where he worked as a baker. Linda and Zachary would stay with Sky as he underwent painful treatments. The IV was particularly painful, Mrs. Lloyd said, and Sky would scream when it was inserted in his arm. "I used to watch the machine, and I would imagine each drop from the IV was the drop that was healing him," Mrs. Lloyd said. Mrs. Lloyd said she owes a debt of gratitude to the employees of the 5th floor at UMass Memorial Medical Center's University Campus. She said she also is grateful to the support of Helen Mullen, a clinical nurse who helped Sky as he underwent seemingly endless treatments. Dr. Alan Michelson, who specializes in pediatric hematology, is the founder and director of the Center for Platelet Function Studies at the University of Massachusetts Medical School. The center is an international, multidisciplinary collaboration for the study of platelets and the treatment of rare forms of ITP. The state of the art research center has treated Sky Lloyd since he was diagnosed with abnormality in February 1993. "Sky has a severe form of ITP," Dr. Michelson said. "Accidents that would be considered routine to a child could be life- threatening to Sky." Doctors don't know what causes ITP, which affects about 200,000 children in the United States. It often occurs in otherwise healthy children a few days or weeks after a viral infection. It is believed that this infection causes the immune system to lose the ability to distinguish between the body's own cells and those of invaders. There is also some evidence that certain vaccines may trigger ITP, but this occurs in only a small percentage of cases. Why ITP results in some children and not others who have had the same infection, virus or vaccine is not known About a dozen children a year in Central Massachusetts are diagnosed with ITP, Dr. Michelson said, and only about one in 100,000 suffers the same form of ITP as Sky. Some 97 percent of children diagnosed with ITP respond to a variety of treatments and make a full recovery. Those who do not respond to conventional treatments have what is called chronic refractory ITP. Dr. Michelson said Sky has undergone three of the four treatments designed to cure his affliction. He has taken prednisone, a synthetic steroid that has shown to increase platelet levels; intravenous gamma globulin, a liquid cocktail of antibodies that produces a dramatic, though temporary, increase in platelets; and anti-D, a liquid concentrate of antibodies derived from human plasma, which produces a rapid but temporary rise in platelets. "The count may come up a little, but then it goes back down," said Mr. Lloyd, who admits frustration and exasperation at physicians' inability to cure his son. "There's no cure. Every antibody introduced to his body just sits there." The fourth treatment, the surgical removal of the spleen, is successful in 70 percent of ITP cases. Thus far, the Lloyds have been reluctant for Sky to undergo spleen surgery. "The research we had done with people who'd had their spleen removed - a lot of, a great percentage of them, got this disease again three to six months later," Mrs. Lloyd said. "We didn't want to take that chance. Sky needs to keep his body parts. The spleen is a very necessary part of the immune system. We didn't feel it was the right decision to risk that." The Lloyds are now opting for alternative treatments that they say have worked on other children. These include acupuncture, chiropractic therapy, a macrobiotic diet and physical therapy. They'd like Sky to attend the Kushi Institute in Becket. The educational and medicinal facility focuses on helping people recover from illness through nature and environmental healing. But Dana Lloyd's insurance, which the family said has been terrific in covering most of Sky's treatments, will not cover the alternative methods the family would now like to try. So the family has started a campaign to raise money to pay for the alternative treatments. They aren't comfortable seeking donations, they say, but it is their last resort. They have opened an account in Sky's name at Country Bank for Savings, 352 Palmer Road, Ware. "We just want to help Sky," Mrs. Lloyd said." Last night I called Linda S. Lloyd to find out how Sky is doing and she said the condition is the same as in the story and that if people would like to help with a donation of a check or money order, to please send it to: The Account For Sky Lloyd, at the WAL*MART BRANCH of the Country Bank for Savings, 352 Palmer Road, Ware, MA 01082 Tel. (413) 967-4099 http://www.countrybank.com/branches_warewalmart.htm If people would like to contact the Lloyd family, their e-mail address is seafairy108@yahoo.com Thank you, very much. _||_ Bruce Paine |
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Sky Lloyd--PLEASE HELP
Hello,,,,my son is 13yrs.old and has had severe ITP for almost 12yrs.
It's a severely low platelet count. The average count is 140,000-400,000, his are 1,000-5000. He can't do anything physical for risk of a bleed. He also has mild autism, the sensory system is extremely heightened. A woman from the ITP society, went to Kushi institute after suffering severely with traditional western treatment for ITP. She is in remission and has been for years. She gives me hope because I am on 24/7 and Sky needs to get on with living and be free from this problem. I am not able to work, because of these circumstances.just explained. We have opened an account for him so that we can use the funds for wholistic services for him....we are trying to get Sky and myself to Kushi Institute for the Way To Health Program. ....please send donations to Sky Lloyd c/o...Country Bank for savings Wal-Mart branch, 352 Palmer Rd. Ware Ma, 01082. THANKS SO MUCH -LINDA- |
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Sky Lloyd--PLEASE HELP
Hello,,,,my son is 13yrs.old and has had severe ITP for almost 12yrs.
It's a severely low platelet count. The average count is 140,000-400,000, his are 1,000-5000. He can't do anything physical for risk of a bleed. He also has mild autism, the sensory system is extremely heightened. A woman from the ITP society, went to Kushi institute after suffering severely with traditional western treatment for ITP. She is in remission and has been for years. She gives me hope because I am on 24/7 and Sky needs to get on with living and be free from this problem. I am not able to work, because of these circumstances.just explained. We have opened an account for him so that we can use the funds for wholistic services for him....we are trying to get Sky and myself to Kushi Institute for the Way To Health Program. ....please send donations to Sky Lloyd c/o...Country Bank for savings Wal-Mart branch, 352 Palmer Rd. Ware Ma, 01082. THANKS SO MUCH -LINDA- PS: please send this to as many people who you think will be able to help, as possible... |
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Re: Boy needs help getting to the Kushi Institute to help heal his ITP!
In fact Iam looking for a natural treatment to control my low platlets I have. since 1988 . I am getting Cortisone(prednisolone 5 mg)daily.The ITP I have is becoming really tiring with the cortisone I get. Could you tell me what to do?
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