Children

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	Hello, I'm Jonathan. I was born on 3rd November 1995, and I have Isolated Lissencephaly. I have a big Sister called Katherine and a dog called Lucy who kisses my face and a kitten called Jess. I go to Kilronan School which I enjoy very much, when I am well. I suffer from seizures nearly every day and I have a G-TUBE in my tummy.I need lots of help to do every day things as I cannot walk or sit up on my own. My Mummy is called Helen and my Daddy is called Christopher. I am a very happy boy and I love people playing and talking to me. (Jan 2002)
	Hi, I'm Jack! I'm 7 years old and live with my Mum & Dad and my little brother Matthew. I was born in August 1995 and have Walker Warburg Syndrome (type II Lissencephaly). I have hydrocephalus, diabetes insipidus and epilepsy However, I'm a chirpy little chap and am usually as happy as Larry. I do have problems with my temperature fluctuating and this can make me feel quite poorly. I go to Kingsley School - which I absolutely love. I really like swimming and my favourite time of day is lunchtime - yummy! One thing that's always been in my favour is my love of food! I have reflux problems but I'm well controlled on medication at the moment. My seizures are also well controlled on Lamotrogine & Carbamazapine. I also go to Rainbows Children's Hospice for respite care and enjoy being spoiled rotten! My hobbies are rolling around on the floor with my brother, and I love it when he tickles me!! (Oct 2002)
	Hello, my name is Jessica Moss, I am 12 years old & I have Walker Warburg Syndrome, or so my doctors tell my mum & dad, but to tell the truth I don't care, because I am me & that's enough. I live at home with my mum & dad & my little brother, Jack, he is 9 years old & able bodied. I go to Elms School in Preston, which is a special school & because my mum & dad say I am special, like my brother Jack, I don't mind going there. The Teachers & their helpers are all very nice & those people from OFSTED say it is a good school, so I am quite happy going there really, and they do teach me useful things. I like lots of different things, but most of all I like being at home, I also like swimming, chocolate, music & my toys. I sometimes go to a respite centre, to get away from my family for a break, I suppose they have a break from me as well. I always look forward to going home though & they always look forward to me coming home as well. (Feb 2003)
	Hello. My son is called Cameron Martin Taylor. He was diagnosed with microlissencephaly when I was 36 weeks pregnant. I had to go for a scan and that is when they told me my child will have development delays but it never bothered me as he was mine. We have just found out he is totally blind as well. We thought he had some sight, but were wrong . He is a very independent boy. He is just learning to walk in a walking frame. Although he started walking on his own, he gave up, so now he has a walker from the hospital. He starts nursery in September, part time. He also self harms himself as well and is very hyperactive. He has medication to sleep .but apart from all the difficulties he is our star. You can contact me at ShellTaylor123@aol.com
	David was our second child born on 25.08.87 in Falkirk, after a normal pregnancy, apart from a cold sore-Cytomegalavirus attack at 4 months stage, and seemed like a breezy happy baby, if a bit floppy. When we went for his hearing test at 7 months the Health visitors felt he may be deaf as he was not turning to sounds. However after investigation this turned out to be due to the fact that he was too floppy to turn and look properly. He was then observed constantly from then on with a consistent diagnosis of global developmental delay, constantly attending phsio, speech, OT and any other therapy available. When he was 7 his behaviour began to deteriorate so much that we were suffering constant aggressive outbursts and attacks from him when things did not go his way-he could not control his anger. Then he'd be fine again and he would ask "Who bit you, mummy?" and would not believe it had been him! We see this now as the pre-curser to the epilepsy taking hold of him. He started having fits at the age of 8 but is now at nearly 16 quite well controlled on Epilim and Lamotrigine. He stays part of the week with a Barnardo's Project locally for children with severe challenging behaviour, and comes home Friday to Sunday. When the epilepsy began this was the first time that we had an MRI and discovered his pachygyria. The Consultant was amazed at all of his achievements, as David was not with us on the day of our appointment. She told us, he would not walk or talk well, he was already walking talking, playing football and generally running wild-which was more of a problem! He is a delight now and a great companion to his younger sister Helen who is 7, she loves him very much. We would love to hear from anyone with a child like David-as we very rarely hear of anyone quite like him.
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