Heather talks about her son

I would like to tell you a little about Guy and how we found out he has the condition, Juvenile Batten disease and the support that SeeAbility has given to us.

Guy developed normally until he was about 7 years old and was a bright child. Then at infant school I started to notice that his learning was slowing down although it was not considered to be a big problem at that time.

On a holiday in the West Country in 1995 Guy ran into a chain link fence. I took him to the opticians but they could not find any problems with his sight. I obtained a second opinion and Guy was diagnosed with Cone and Rod dystrophy in August 1996. Following a spate of seizures, in 2000, Guy was eventually diagnosed with Juvenile Batten disease – a progressive, degenerative, genetic, metabolic disease that few people have heard of as it is relatively rare but it is still the most common neurodegenerative disease in children. There is a shortened life expectancy.

The diagnosis of Juvenile Batten disease was the beginning of a very black time for me. It took me a long time to come to terms with the prognosis. But Guy’s personality has undoubtedly made the whole experience so much easier for me. He has never been depressed or challenging. He has been incredibly accepting of all the changes he has had to cope with – epilepsy, loss of sight, speech and mobility. The way Guy has dealt with all the changes has been a huge relief for me. In the early days I used to worry so much about how he would deal with everything – but this was never really a problem. He dealt with it. I would say to parents and carers – try not to worry too much about the future (easier said than done!). Cross the bridges when you get to them and get as much support as you can from family, friends and support organisations, such as SeeAbility.

Guy attended main stream junior school. As I wanted him to be with other young people that were experiencing visual impairment, Guy transferred to Dorton House School for the visually impaired in Kent in September 1999. He had a wonderful four years there and then transferred to their sixth form college.

It was hard when he returned home from college at eighteen. At that time, Guy was still relatively mobile but needed quite a lot of support. I was still working and only managed this because I had different people looking after Guy whilst I was at work - the rest of the time we spent together. I knew he needed specialist support and that our lives would become very limited if he remained at home. I could not have continued to work and look after him full time. I have been a volunteer with local charities at various times over the last few years and I know how difficult it can be to obtain support services at home.

Guy was offered a place at Heather House when he was eighteen. At the time I thought great – the timing couldn’t have been better. SeeAbility’s Heather House, is the only home in the UK that specialises in Juvenile Batten Disease and has a world-wide reputation. Unfortunately, I struggled to get the funding for Guy’s placement. In the end, with the help of my local MP and lots of other people, we secured a place for Guy at Heather House and he moved in towards the end of 2006. This was a huge weight off my shoulders as I was no longer solely responsible for his care. I know that he is being looked after by professionals who understand his condition and I am encouraged to be fully involved with his care – which is fantastic.

Guy has remained happy throughout his stay at Heather House. Even though he has very little speech left he still is having fun and I join him weekly and stay over as there are guest suites available. I love to see him enjoy himself, particularly in his music and IT sessions, in the Penney Centre, the activity centre at Heather House, which is also run by SeeAbility.

It is the buzz of the Penney Centre and activities that are available to him; the staff know what he enjoys doing. He goes to the gym with the physiotherapist and works out. I think he looks pretty fit even though he does use a wheelchair now. My priority is to keep him as happy and healthy as possible for the rest of his life.

I think that Heather House is a wonderful place – it is unique. The Manager Sarah is a voice of reason, and the staff are always knowledgeable, providing the best support in a very caring way. With everything that is available there it just seemed the right place for my son. Obviously in an ideal world he would not have the disease. I know he is in the right place and he has a good quality of life. I feel more comfortable there than anywhere else because I am close to Guy and I know he is very well supported.