Tamzin has SWAN (Symptoms without a Name) with degeneration to her brain and severe developmental delay with seizures. Here is her story during lockdown, told by mum, Alex:

I don’t go out a huge amount anyway in normal circumstances as I just worry about Tamzin and also my other children. I used to love biking, my husband Rod and I both did, but my motorbike is in the garage now. I would just worry too much to go out on it. And I’m fearful now that we’re back in isolation, as we have been there before with Tamzin, but it’s just the fact that we’ve been told not to go out rather than making that decision ourselves. It is stressful and I think it has definitely affected my mental and emotional health, staying in all of the time. I have become quite tearful and sometimes it is really hard to cope.  

We have to shield Tamzin and have been isolating from a week before everyone else went into lockdown. I’ve got six boys from 7-20 years too and there’s nine of us in the house all together, so it is a real houseful at times and that brings its own challenges. As well as coping with Tamzin’s life-limiting condition, a number of my other children have educational and behavioural needs including autism and dyslexia and now we’re all at home it is very intense.

The last few days have been particularly tough. We usually have care for Tamzin at night but the night carers we normally have are in self-isolation. So, I’ve been staying up all night to look after her as well as caring for her during the day. I’m exhausted. We can’t just replace the carers as Tamzin needs someone who knows her, who knows when she has had a seizure as sometimes it is hard to tell. That’s put an added strain on everything, but the most important thing is to keep her safe.   

Tamzin with her Julia's House window garden display

My husband and eldest son are key workers and have to be really careful – changing before they come back into the house, using gloves and wipes. My husband works nights too, so that can be hard trying to ensure he gets some sleep, particularly when we have no night care for Tamzin as I just have to keep going through the day too.

Tamzin had two seizures when her Julia’s House nurse, Marisa, was here the other day. The Julia’s House team know her so well so they can recognise the signs. It’s such a relief when they arrive. I can just breathe out, decompress and not worry about Tamzin; I know she is in safe hands. 

This week I’ve been trying to plant seeds in the garden with the boys but I had to keep an eye on Tamzin as she was watching from the doorway. When Marisa and the team came, I could go outside properly and get my hands dirty with the boys, planting all the seeds and doing things that other people take for granted, like filling up the paddling pool. It also gives me time to help the boys with their school work, particularly my son who has dyslexia, as otherwise I always have to do that with an eye on Tamzin. That isn’t easy as of course, they don’t have 100% of my attention. The boys do have to go without things sometimes because I just can’t leave Tamzin or even take her upstairs. 

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Those few hours that Julia’s House are here give me some me time too – they look after Tamzin but it is also mental health support for me. They take a massive weight off my shoulders. Sometimes I just go and have a bath. I can recharge my batteries so I can be a good mum to my children and I know Tamzin is in safe hands and having a lovely time – she’s such a happy little girl. She is severely visually impaired so wearing PPE doesn’t stop her from recognising her nurses and carers as she can still recognise their voices – as soon as they get here Tamzin is on the go!  

We are all missing the hospice sessions. Tamzin loves it at the hospice and we’re missing the family time those sessions enable us to have. The boys too are missing their sibling activities. It’s so nice for them to go somewhere where they can just be themselves, just be children. They come back like different children. We all miss that opportunity for space and interaction. We all miss that time to recharge and just be ourselves.