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Annabelle's Story

How Julia's House is helping Annabelle, and now her brother Robbie through a devastating diagnosis

When Annabelle started having problems with her sight we thought she was going blind, which is devastating enough. But a blood test revealed something much, much worse. I was about to dish up dinner when the paediatrician phoned: Annabelle had Juevenile Battens Disease, a degenerative condition that causes blindness, seizures and dementia. Her life expectancy is late teens to early twenties.

I served up the meal, cleared up, bathed the children and waited for my husband Andy to get home from work. When he pulled into the drive I got into the car next to him and burst into tears. Since that awful day I've had many days when I just cry - why, why us?

Batten's Disease starts in the brain – the cells don’t recycle protein which leads to dementia, behavioural changes and seizures. Annabelle will slowly lose all her abilities and at some point between the age of 14 and 16 she will have a big seizure – and this will lead to massive decline in her condition. Every single day I think: is this the day the big seizure will come? It is agony to live with that.

We have lost friends because other parents want to shield their child from what is happening to Annabelle - it’s too upsetting for them. I remember going to the school fair just after Annabelle had started needing a wheelchair. I pushed her into the hall and it felt like the whole place fell silent. I heard people whispering to each other “poor Annabelle”. I just don’t want that for her, for any of us, so I avoid going to events and outings to stay away from it.  

Annabelle suffers from anxiety. It is scary to be losing control over her body. She knows that Battens Disease is going to take her life and she has a list of things she wants to do before it's too late - like earn every Girl Guides badge.

When Annabelle lost her sight her world just started shrinking– she could not go to youth club any more, she had to give up gymnastics and then friends started melting away. Her friends have reached that age where they were going out together, to the cinema or bowling and they didn’t want to do things with her any more. They don’t know how to cope with what’s happening and don’t want to feel responsible for her, either.

We were blown away by what Julia's House could offer, it just felt so positive and it has opened up new friendships for Annabelle. She goes to the Julia's House youth club and just fitted in straight away; there were no awkward questions or difficult moments. It was lovely seeing her so relaxed. We also have community sits - care at home for Annabelle - so I can go out and do something with my other children.

Juvenile Battens Disease is genetic and we were utterly devastated to discover that Annabelle's younger brother Robbie, who is six, also has the disease. He was diagnosed at the age of 3.5yrs and at that point he was showing no symptoms. Now he has started to lose his sight and will be blind by the time he is 10. There is a six year age difference between them and we worry that Annabelle is a daily reminder of what is going to happen to him. Thankfully, our two other children, Aiden, 14, and Georgie, eight, are clear. 

There are only 42 children in the UK known to have this type of Juvenile Battens Disease and two of them are Annabelle and Robbie.

We're on an emptional rollercoaster trying to protect Robbie. We do not want him to see the fear we have and Annabelle is a daily reminder of what's to come. Having Julia's House care for Robbie too is a comfort because when Annabelle has gone, he will have that level of understanding and support at a really difficult time - we all will.

Julia's House feels like a family that is there for our family - there for big, life-changing things but there for the little things too, like when Father Christmas gave Annabelle tickets to see The Vamps and Nurse Celia arranged for her to meet them. Annabelle cried and cried, it was so emotional.

Each Christmas becomes more precious than the last because we don't know how many more we have left together. I can't believe what has happened to our family - the impact on all of us. Having Julia's House there has been such a comfort.

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I feel laid back and happy when I leave Annabelle at Julia's House because I know she is going to have a wonderful time.

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