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| "The BDFA has given me hope,
encouragement and support and helped me recognise the good things
and that happy times can still be accomplished by my daughter and
the rest of the family" Sharon Burnham |
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Juvenile Batten Disease: Our Story |
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My name is Marion, and last year I became a Trustee for the Batten Disease Family Association working within the Support team. I am married to Steve and we have two children, Stuart and Lisa. I wanted to become involved in the Association because I wanted to help other families and try to help make a difference for them. For us, it all started back in the Easter of 1988 when our son Stuart was attending the West of England School for Children with Little or No Sight in Exeter. He had already been diagnosed with Macular Degeneration but the staff had wanted us to go to Great Ormand Street Hospital to get a proper diagnosis. Stuart had all the tests and eventually over the Easter Holiday we were finally told the devastating news that he had Juvenile Batten Disease. Stuart was on holiday in France when we spoke to our family members and told them the outcome of all the tests. During the following years we went as a family to Disneyland. We bought a static caravan and spent holidays playing in the water at Weymouth and eating barbeque dinners. We took him jet skiing and he wasn’t happy unless he capsized it each time. The college took him caving, tobogganing, rock climbing. He learnt to swim and was taught self defence. He even once drove a car. We taught him to live a full life but life was cruel and time was beginning to catch us up. At the age of 19 he left the West of England College as the disease was taking its grip and his epilepsy was in its element. Medication was now becoming a major part of his life. It was time for him to move from college and take his next step and move to a residential home... a nursing home... call it what you like you like, but we called it Heather House. He settled in, made new friends and adjusted to his new life. He has all the care that he needs and the staff look after him very well. He is now 29, in a wheelchair and approaching the later stages of the disease. He still enjoys a joke and banter, and although he can’t converse, he can still makes his choices obvious. On a good day he continues to take part in some of the activities that are carried out in the Day Activity Centre (the Penney Centre as it’s called). On a bad day he will sleep all day and not eat or drink. During all this time we have all travelled along an emotional journey of grief, anger, frustration, guilt, happiness and pleasure. Sometimes we have struggled when times have been difficult, but we try to stay strong and hope that we will come through O.K. I’m just so happy that Stuart has done things that some young people will never do and he has enjoyed life. He has brought us some tears, smiles and laughs and hope he will continue to do so for a little while longer. Marion |
