June 23, 1998
We Care Envisioning a better future Many children who suffer from the disfiguring "elephant's trunk" disease are too poor to afford surgery. Apart from the pain of being a social outcast, if untreated the disease can also cause blindness and brain damage Kulcharee Tansubhapol Rattikorn Kobthanyakit, 13, felt like a freak most of her life because of a thumb-sized tumour on the bridge of her nose. "People would stare at me which made me cry. They would avoid me which made me so lonely," said the teenager. A child suffering from Frontoethmoidal Encephalomeningocele, or FEEM, known cruelly in Thai as Nguang Chang, or "elephant's trunk" disease, because the brain tumour grows on the nose. Apart from disfiguring the face by lengthening the space between the eye sockets, big tumours block the patient's eyesight and many become blind altogether when the tumour becomes huge. -- Yingyong Un-anongrak To win friends, Rattikorn would give them sweets. Her father tried to help by making sure her school uniform was perfectly clean everyday. Yet other children still avoided her because they were frightened of the tumour. "I was so unhappy. I did not want to go to school anymore," recalled Rattikorn. Born with the tumour, it became more painful as it grew bigger. The disease is known as Frontoethmoidal Encephalomeningocele, or FEEM. In Thai, it is called Nguang Chang, or elephant's trunk, because the tumour grows on the nose. Apart from disfiguring the face by lengthening the space between the eye sockets, big tumours block the patient's eyesight and many become blind altogether when the tumour becomes huge. "I felt so sorry for my daughter," said Rattikorn's mother, Yupin. "I wanted to take her to the hospital, but we are so poor that we can't afford even transportation expenses to a hospital nearby." In Thap Than district of Uthai Thani province where Rattikorn's family lives, there are many children suffering from the same symptoms as Rattikorn. In most cases, the tumour has hindered the children's ability to see. It obstructs their eyesight and they cannot read very well. In some cases, the patients' heads are also large and disfigured because of hydrocephalus, or accumulation of fluid in the brain, caused by the tumour, which can cause mental handicaps if untreated. Due to poor surgical equipment and lack of know-how in rural hospitals, operations are not always successful. When Rattikorn was 11 years old, her mother gave up hope of giving her daughter an operation after seeing that the tumour of her neighbour's child refused to go away after an operation. Many young sufferers in Uthai Thani did not receive proper treatment until three years ago when staff at the World Vision Foundation of Thailand in the province came across a boy suffering from FEEM disease. The foundation consulted Dr Chopeow Taecholarn, a neurosurgeon at Chulalongkorn University, and the boy received an operation. Since then, World Vision has identified and helped other children suffering from the disease, said Chusak Wuthiwaropas, director of the World Vision Foundation of Thailand. "Our survey found about 27 children with FEEM. But there may still be others we haven't found," he said. Rattikorn was admitted to Chulalongkorn Hospital where she received an operation last year. Now the girl's tumour has been removed, leaving only a small scar which can be treated with cosmetic surgery. Apart from Rattikorn, three other children in Uthai Thani province have received financial support through the World Vision Foundation's "Our Future" project started three years ago. Its main purpose is to support their education, but some funds were also used for surgery. There are six more children on the waiting list to receive the operation. "This disease is very dangerous," said Dr Chopeow. "It's a tumour from the brain that pierces through a hole in the forehead, the bridge of the nose, and the eye socket. "It's much better if they get an operation as soon as possible. If they don't, part of their brain will be damaged because the tumour weighs it down." About 70-75 percent of people with FEEM suffer brain damage, reducing their IQs to half the normal level. Assoc Prof Charan Mahatumarat of the Plastic and Reconstructive Surgery Department at Chulalongkorn Hospital, said that the tumour will generally appear in babies about three months after they are born and it grows bigger as they grow. "It's much better if the child is taken to a hospital to be treated when they are young," said Assoc Prof Charan. "But many parents don't realise the danger or are too poor to afford the operation. As a result, they have to endure the suffering far too long." The oldest FEEM patient, who was recently admitted to the hospital, was aged 35 years old, said the surgeon. Dr Chopeow added that previously two operations totalling six hours were needed to remove a tumour. To reduce the risk to the patient, Chulalongkorn Hospital surgeons, led by Dr Charas Suwanwela, developed a technique which required only one four-hour operation. To help the children live a normal life, the World Vision Foundation of Thailand has set aside a budget of 50,000 baht for each patient. "We want to help them not only to endure the pain but also to enjoy life, to gain more self-confidence and be willing to go to school, to have their reading problems solved, to live more happily in society," said the director. The foundation is seeking donations from the public to cover the children's expenses before and after the operation, such as transportation for relatives to visit and care for them during their lengthy stay at the hospital. For young Rattikorn, life is now a lot happier than it was before the operation. The Matthayom 3 student doesn't feel like the odd one out among her classmates any more. Most importantly, she now has hope for the future. "I used to think I wouldn't continue my studies after Mattayom 6. Now I've changed my mind. I want to study higher so I can help support my family and take care of my parents." [X]Info for donations: Name of organisation: The World Vision Foundation of Thailand Contact person: Valaiporn Piriyakovint Address:582/18-22 Soi Ekamai (Sukhumvit 63) near Tai Ping Condominium, Prakanong, Bangkok Tel: 381-8863-5 Or you can send your cheque payable to Post Publishing Public Company Limited (For World Vision's Surgery Project for Children). Send it to Mrs Kusuma Mintakhin, Editorial Manager, 136 Na Ranong Road, off Sunthorn Kosa, Klong Toey, Bangkok 10110. Tel 240-3700 ext 3224-5. Please also attach your name and address with your cheque so that we can send you the receipt. "We Care" is a weekly series honouring people who believe in giving. You can show you care by supporting the projects featured here each week. You can also let us know about people who unselfishly help others so we can honour them in these pages. Fax "We Care" on 240-3666 or call 240-3700 ext 3208 or 3212. Alternatively, e-mail <sanitsuda@bangkokpost.net>. Medical equipment needed Ban Khok Hospital, a community hospital in Uttaradit province, is in need of medical equipment to help pregnant women and patients suffering strokes. The equipment needed is an obstetrical doppler and a defibrillator. An obstetrical doppler is used to examine pregnant women whose foetus has stopped moving to ascertain if the foetus is still alive. A defibrillator is used to stimualte heart function after a patient has had a stroke. Ban Khok Hospital, with only 10 beds and two doctors, is 180 km from Muang Uttaradit. The hospital has no budget for the 400,000 baht needed to purchase the equipment and is asking for public donations to help save lives in rural Thailand. Interested persons can contact Dr Salarin Kongsamak, the hospital director, or Dr Preeyanuch Tansupapol at (055) 486-126 and 486-063. Or write to them at Ban Khok Hospital, Ban Khok district, Uttaradit 53180. Alternatively, send your cheque payable to Post Publishing Public Company Limited (For Ban Khok Hospital) to Mrs Kusuma Mintakhin, Editorial Manager, 136 Na Ranong Road, off Sunthorn Kosa, Klong Toey, Bangkok 10110. Tel 240-3700 ext 3224-5. Please also attach your name and address with your cheque so that we can send you the receipt.		Classifeds Jobs Property Entertainment Investment Education Travel Sales Learn English Weekly Database Horizons NiteOwl Student Weekly Real Time Special We Care Street Art Back Issues Last Month Archive Company Servcies Subscriptions Advertising Annual Report
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