Parents tell of daughter's difference

Ruapehu Bulletin, Volume 10, Issue 466, 15 December 1992, Page 3

Parents tell of daughter's difference

For Ohakune youngster Jenna Parkes, life is not as easy as others her age. The five-year-old suffers from a rare disease ' called Lennox gastraut syndrome, which has been found in only 10 other New Zealand children. The disease is a very severe epilepsy and consists of five types of seizures An absence seizure causes Jenna to daydream for a couple of seconds, and she has hundreds of these a day. A drop seizure will make her lose control of some of her muscles, leading her to drop to the ground without waming. "It is like someone has kicked her feet out from under her," says her father, Phillip. "She has had black eyes and raw knees." The third type of seizure is the 'grand mai' which is a major epilep-

tic fit that can last from 10 minutes to three hours. The fourth is a cross between a drop and an absence seizure and causes Jenna' s face to fall forward while she daydreams. "It's like someone has pulled her fuse out," says Phillip. Kerry and Phillip are not sure of the name of the fifth type of seizure. ""It is the hardest to control - she is still alert but she gets very confused, she walks funny and she slurs her words, just like she's drunk". Jenna developed the disease at the age of three for no apparent reason. She must now wear a helmet nearly all the time to protect her from falls and will soon have to start wearing knee pads. Phillip and Kerry say a lot of people stare at Jenna, mainly because they do not under stand what is going on. "I would just like people to understand, because Jenna is going to be around this town for

some time," says Kerry. ~ Phillip says those people who know Jenna and are aware of her situation have no problems being around her. She attends Ohakune Kindergarten and will start school in February,

where she will have a special teacher, as she can not be left alone in case of falls. Phillip says the only hope of helping Jenna is through surgery or a special diet, but neither have been proven effective. In

the meantime, she takes quite a lot of medicine and relies on the help of those people around her. "We have had a lot of help," says Kerry. "But it is getting people to understand - that is the hard part."