Annabelle and Robbie’s Story | Julia's House

Sadly Annabelle passed away in January 2024, aged 18 years old. Her family would like us to continue to share her story, so Annabelle can help raise awareness of Julia's House and the care we provide for families. We are continuing to support Annabelle's brother, Robbie, and the Hover family.

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

17 year old Annabelle and her 10 year old brother Robbie have Juvenile Batten Disease – a degenerative and life-limiting neurological condition which leads to loss of vision and mobility, seizures and dementia. Symptoms typically begin to show around the age of six or seven and at some point during the teenage years seizures will increase, leading to a massive decline in the condition. Young people with Juvenile Batten Disease are generally expected to live to their late teens or early twenties.

When Annabelle’s deteriorating eyesight eventually led to her diagnosis, there was yet more devastating news for parents Lisa and Andy – they were told the genetic condition would also affect their youngest son, Robbie.

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“We first came into contact with Julia’s House in 2018,” recalls Lisa. “Annabelle was registered blind but at the time Robbie was symptom free. Since then he has lost all his eyesight and he’s had a rough time with seizures.

“Annabelle hasn’t been affected so much by seizures. She had one not long after Julia’s House came into our lives and I remember ringing up in a panic, saying ‘She’s had her first seizure, I don’t know what to do!’ Having Julia’s House on the end of a phone, giving me advice and reassurance was amazing.

“Annabelle’s mobility has deteriorated slightly, she’s a bit slower now. Her memory loss from the dementia is quite apparent at times. She suffers with anxiety, and all the pressure of her GCSE’s triggered her to have a bit of a breakdown. It was so bad she was on antipsychotic medication. She wasn’t dressing herself, she wasn’t talking or laughing and she was very, very timid, which is not like her at all. She stabilised earlier this year, came off the medication and – wham, bam! She’s back!

“We were expecting a huge decline with Annabelle, as she is extremely well for someone with Batten disease. She’s very academic, always has her finger on the button, and her speech is very clear.

“Robbie seemed to lose his sight a lot sooner. Academically he struggles to learn. The seizures are a huge problem for him and he has behavioural problems, but his mobility is OK.

“Although they have the same condition they have taken very different paths. You ask yourself how it’s possible to have one child who is five years older and is so well, then have the other one deteriorating so much faster.”

Having two seriously ill children in the family means that everyone helps out where needed, none more so than Annabelle and Robbie’s 11 year-old sister, Georgie.

“Last week we were in the car, taking Georgie to football, when she alerted me to Robbie having a seizure in the back of the car. We happened to be passing our GP surgery so I pulled in and went to the back of the car. Georgie jumped out and made Annabelle sit in the front out of the way. Robbie came round but immediately went into a second seizure. I told Georgie to run into the surgery and get me some help, because I’d never dealt with one seizure straight after another before. Georgie did as I asked – she politely asked to go to the front of the queue and she gave all Robbie’s details before coming back with a doctor and a nurse. A gentleman came up to us afterwards and told me how well she had behaved.

“Robbie had a quite a few seizures in the next 24 hours. He had one on the sofa at home. I was trying to put him into the recovery position but he kept rolling onto his back. He had been vomiting beforehand so I was really concerned. Georgie grabbed a cushion and shoved it between his back and the sofa so he couldn’t roll.

“She gives me the peace of mind that if I need to go to the toilet or make dinner she can sit with him. Georgie really steps up to the mark in these situations, but I know it’s taken a toll on her. On Sunday morning Robbie was up early and had a seizure. He was recovering on the kitchen floor when Georgie came downstairs and straight away she knew what had happened. She just sat there and cried, so I do worry about her a lot. At 18, my eldest, Aiden, can escape very easily, but Georgie is 11. She can’t just go out, she’s in the thick of it all the time.”

With four young people all trying to get ready, mornings can be particularly hectic in the Hover household, says Lisa.

“Although Annabelle and Robbie are both completely blind now, they are very independent and still like to dress and feed themselves. They spill drinks, they knock bowls over. Georgie goes to secondary school and is able to make her own way there. Aiden is about to go off to university, but at the moment I have to take him to work, which is an added pressure. We have a carer to help us, so I take Annabelle to school while she takes Robbie. We try to keep them separate because they do clash.

“During the day I try to get everything prepared for the evening. Annabelle usually gives me a list of things to do, such as making sure her teddy is in the right place, and I always obey that list because it’s Annabelle’s way of adjusting from school life to home life. She knows what she’s asked for, and it makes that transition easier for her.

“Robbie is like a coiled spring. At school he’s very calm, he keeps it all in, then he comes home and he’s a complete whirlwind. So for about an hour we keep them separate because Annabelle wants calm and quietness while she adjusts to being at home and Robbie is like a jumping jack!

“Until recently Robbie was going to Cubs, supported by his Julia’s House carers, but because he was getting quite tired and the seizures were mainly happening in the evening, he had to stop. He has become a bit scared that that he might have one.

“Annabelle goes to Rangers every other week and Julia’s House support her there so she doesn’t have to have mum tagging along. She spends a lot of time with me, and even though she has Batten disease she’s still a teenager who doesn’t want her mum there. She has a friendship with her Julia’s House nurses, she trusts them. Robbie is exactly the same. With his seizures he finds it hard to be separated from the family, so when he has his nurses around he can forget about me. And it gives Georgie a break and allows her to see that there is a brighter side to everything that’s happening, and that she’s not forgotten.

“Georgie plays football on Tuesdays, which is tricky logistically as Andy works away from home three days a week. Luckily I have a couple of friends who help out with getting her there. She also enjoys spending time with Julia’s House Sibling Worker, Maria. They often walk into town together and have a chat. She loves the independence and it’s her time.

“This is the first year we haven’t had a family holiday together. We usually go away in our motor home, but the last few years have proved very difficult. Annabelle and Robbie have very different needs to each other, but also very different needs to our other children, Aiden and Georgie. This year we had the opportunity to take Annabelle and Robbie to Weymouth for four days, and we had fun with just the two of them. They then had respite care which allowed us to focus on the other two, to go away and do things with them that we wouldn’t do if Annabelle and Robbie were with us. It’s lovely to have the opportunity to have separate time.

“When things get hectic it’s easy for Andy and I to neglect ourselves as a couple, you get into a whirlwind where you’re just concentrating on the children. Andy is a very practical person, so when I get emotional he helps me get back on track and get my head straight again. We use some of our respite time now, once a month, where we can just be a couple and do something together that doesn’t involve chores or errands.

“Life would be a lot less positive without Julia’s House. When you hear the word ‘hospice’ you immediately imagine the negative side of things, but actually, Julia’s House is very much the opposite. It’s a very positive place. Andy and I are very grateful for the support we have from Julia’s House. And it’s not just the respite care – it’s having that voice at the end of a phone, or receiving a text from our nurse, just asking, ‘How are things?’ It means an awful lot.”

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“Although they have the same condition they have taken very different paths. You ask yourself how it’s possible to have one child who is five years older and is so well, then have the other one deteriorating so much faster”

Annabelle’s mum

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