My daughter's journey

“ Stephanie was perfect until she was about 5 years old. Her school teacher was the first to notice something and suggested that Stephanie might have a sight problem. We had her eyes tested and glasses were prescribed for her.

Stephanie progressed normally but by the time she was six it was obvious that there was a problem but we could not put our finger on it. We kept having her eyes tested and going to the eye hospital, but everyone kept saying that it was not a sight problem.

In 1989, we took her on a family holiday, by then it was really obvious that she couldn’t see as she was walking into things as she was away from familiar surroundings.

As soon as we got home we went to the eye hospital once again and explained what was happening. We met with a specialist who gave her a thorough examination and said she could see!. They thought that she was hystically blind which means she has witnessed something that she did not like and pretending she can’t see.

We were then referred to a psychotherapy team. Stephanie’s sight at this time was getting worse.

At the age of nine we had to beg to have Stephanie looked at once again. Eventually I was referred to the John Radcliff Hospital in Oxford and they confirmed that Stephanie could not see. They did tests and diagnosed her as having Juvenile Batten Disease. Stephanie took it all in her stride - I was devastated but at the same time relieved. It took us four years to get to this point. We were lucky some people don’t get diagnosed!

I then went on a 10 year mission to do what ever Stephanie wanted to do;  we have travelled all over the world to experience things together; rock climbing, fly a planes...so many amazing experiences. Gordon Ramsey even cooked dinner for her, and Raymond Blanc did a cheese tasting for her - she loves smelly cheeses. The only thing I failed to do was to get her to meet the Spice Girls.

SeeAbility’s Heather House
I’d never heard of SeeAbility -like any organisation that is attached to a disease until you come into contact with it yourself you don’t know it exists. It’s the only specialist place in the UK and I found out about it on the internet.

I know that people have travelled from all over the country to be there. I am so grateful that we found it.

Stephanie visited Heather House to use their Activity Centre at first and really enjoyed it. It was her choice to live at Heather House. I think she is in the best possible place, I can’t image being anywhere else – it was worth the wait.

She moved into Heather House in October 2010. Her room is lovely very pink and girlie and she has settled in amazingly well and the staff are fantastic. I tell everyone how wonderful it is. It is almost like walking in and being part of a family.

Stephanie is a lot more settled and the staff are getting to know her, she even said one of the staff members name for the first time the other day, which we were pleased to hear.

The fantastic thing is that she is in the right place and that helps so I don’t feel as guilty, or not any more than you would, because you do. She was my best friend and we did everything together but I lost her last year – it is like Alzheimer’s, you grieve twice.

When you talk to her about memories of the past a little smile comes on her face which lets you know she does remember things.”