Alfie's Story | Julia's House

Alfie contracted bacterial meningitis when he was five months old. It left him with significant brain damage to the front of his brain.

When it first happened, he was completely paralysed in the right-hand side of his body and he started having seizures – these awful prolonged, tonic-clonic seizures. We were in hospital for a couple of months and by the time we came out, it seemed as though the seizures had stopped. But unfortunately, just a couple of months later into recovery, Alfie started to have seizures again.

From that moment on, looking after Alfie became life consuming.

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Alfie was having seizures every moment of every day. As soon as you woke up, Alfie would have a seizure. He would even have seizures in the night. He had hundreds a day; it was all he did. We really lost a good year of our lives because every time we tried to go anywhere, Alfie would have a seizure.

Over the past two years, Alfie’s mobility has improved a lot, and we’ve finally managed to gather some seizure control. We can go out now and he is starting to develop, which is so lovely. But obviously, he’s massively behind. Alfie will be four years old soon, but mentally he’s like a 9–12-month-old baby, so he needs 24-hour care for every moment of his life. He has no understanding of the world; he has no understanding of danger. He just needs somebody there all the time.

Alfie suffers with a lot of behavioural issues, and he does a lot of self-harming. It’s distressing to see that. It’s not something any parent wishes to see – their own child physically hurting themselves.

He hurts himself on a daily basis. And if he’s not hurting himself, he comes to us and he bites and hits and kicks us as well. So, it can be pretty brutal at times. But he’s also such a lovely, cheery, little boy that you kind of forget all the bad stuff and you just focus on the good stuff, and it makes it all so worth it.

Alfie’s got a lot going on, bless him. But we are getting on the better side of things and trying to get some sort of normality in our lives.

Alfie loves coming to the Julia’s House hospice. His favourite place is the garden and playing football and chasing bubbles with his nurses and carers. He loves all the active fun, but he also likes lots of quiet cuddles with his nurses and carers too.

Impact on big brother Oliver

I have another son called Oliver, who’s five now. There’s only a year and a half between the boys, so they’re very close in age. They are completely different, but they look identical. Alfie’s quite big for his age, so people mistake them for twins everywhere we go.

I don’t want to say Oliver has missed out because he's had a good life, but obviously the last few years have been rough for him. When Alfie first got ill, I just disappeared off the face of the earth and went to live in hospital with Alfie, and that was the last I saw of Oliver for two months.

It was during COVID times, so I couldn’t have any visitors in the hospital. I could literally talk to Oliver on the ‘phone and that was it.

He was only about two years old, so it was very distressing for him. That night when Alfie went into hospital, I just had to say, ‘You’re moving to Grandma and Grandpa’s and this is where you’ll be now, and Mum won’t be home for a while.’

It’s always been really hard for Oliver. If Alfie gets ill and we call the ambulance, it’s a case of having to tell Oliver, ‘I’ll see you soon.’ And he’s always got that question of, ‘How long it is going to be this time, Mum?’ It’s hard because I can’t say for sure.

The older Oliver gets, the more he understands. Before he would just get upset if ever Alfie was poorly, but now he's taken on more of the carer role.

He worries a lot about whether his brother’s okay. If Alfie’s distressed, Oliver just straight away says, ‘Mum, there’s something wrong with Alife, I think you need to take him to hospital.’ Even if it’s just a check-up, he’ll worry himself and ask, ‘Is Alfie going to be okay?’

It’s terribly endearing but it's also hard when Alfie needs my attention and Oliver is going into panic mode that something is wrong. I have to calm him down and reassure him that Alfie’s going to be okay.

Oliver’s only just recently started school last September. When he was at nursery, they would say he looks after all the other children. He feels that’s his life; if someone falls over, he’s the first person there to pick them up and check them over. He’s such a caring little soul, that he just wants to wrap everybody in cotton wool and look after them.

Only a sibling can understand

At Julia’s House, Oliver can make friends with sisters and brothers who have a similar situation to us at home. It is hard for the siblings. Oliver’s got a world that none of his friends at school understand because it’s a completely different life.

Oliver’s seen things that no child of his age should ever see. He’s been there when Alfie’s been having hundreds of seizures a day. It’s a strange life, but for Oliver that’s just normal. And when you think what other kids experience, that’s just terribly not normal.

It’s so nice for Oliver to have other children at Julia’s House that know his situation – they live it too and they understand. They can support each other in ways that we don’t even know, so that is really lovely.

Housemates

Julia's House also hosts great family events in the summer holidays and the half terms, called Housemates, where they put on fun activities like creepy crawlies and pumpkin carving.

It’s just so nice because we can all go along, and Alfie’s got his friends that he sees at the hospice and there’s siblings there for Oliver, and there are other parents there for me as well.

We’ve been to lots of the events that the Family Support Workers organise and really look forward to them. We loved the Santa train and the Longleat Festival of Lights at Christmas. Last year, I joined a special event just for mums and it was just such a lovely day, spending time with all the other mums, just laughing and forgetting what’s going on at home. Because otherwise you do get bogged down in it.

Time for mums

I’ve met so many friends through Julia’s House, and I have met loads of other mums in a similar position to me, which is just so nice. We talk outside of Julia’s House and we try and meet up sometimes. We have a laugh over things that no one would understand apart from a parent in our situation – it’s all so relatable.

Unless you live with a disabled child, you don't know what life is like. People will compare their well child, and they really don’t understand the complexities of having a disabled child at home and how much that changes your life.

With the other parents at Julia's House, our children are completely different and nothing alike but the basics of having a disabled child and everything that comes with it are still there, and they know the same stresses and the strains as me – they get it. I wouldn’t have that support without Julia’s House and the activities that they organise for mums and families like ours – it's really amazing.

Family Support Workers are like family

The Julia’s House Family Support Workers have helped us so much in lots of different ways – they’re like an extended family.

Our Family Support Worker, Melissa, has been amazing for us. She comes over and we have a cup of tea and sit and chat about everything.

There’s a lot to navigate when you’ve got a disabled child; it can be very lonely and difficult, and no one quite comprehends it. So, to have someone like Melissa there, who understands what you’re going through, is brilliant and makes everything you’re facing feel more manageable.

Financially, Melissa’s helped us so much with applying for grants for equipment to make day-to-day life so much easier.

She applied to a charity called Family Fund, so we could have a mobility car that could get us to hospital and fit all of Alfie’s equipment inside. I didn’t even know the funding existed – no one tells you these things. Alfie can have hundreds of seizures a day, so that car has been our security at a time when life’s not secure.

She also helped us to get funding for Alfie to have a special car seat to make his journeys comfortable and safe, which we would never be able to afford.

It’s amazing to have Melissa’s help because it can be a logistical nightmare trying to get the funding you need. She fights for Alfie to make sure he gets the right support that he needs. It means I can put my time and effort into looking after Alfie, rather than being sat on the end of a phone.

Melissa is there doing it all for us, and I can’t put into words how life-changing that is to have her support.

Family holiday with Julia’s House

Recently, we won a week holiday to Scotland through Julia’s House. I couldn’t believe I won! It was absolutely stunning; it was just the most perfect week forgetting the stresses of home and making memories together.

We had an apartment and it could sleep six, which was fabulous because it meant I could take my mum and dad with me. They’re my greatest support and I couldn’t do anything without them because I’m only one person and with Alfie we need about 80 hands.

It was a long journey up to Scotland and Alfie’s not the best in the car as it is, let alone for a very long time. But we made it, and it was all so worth it because we just forgot about everything for a week and just enjoyed ourselves, rather than running around with the stresses of everything at home.

And I want to go back to Scotland so much now. It’s given us the motivation that we can get out there and do these things that we want to do. So, not only has it been an amazing experience but it’s also given us the confidence to go out and do it as a family as well, which was something we wouldn’t have done if we didn’t win the holiday.

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