Lottie’s story

Freddie Norton-Usher is now a very lively 2 and a half year old, but a little over a year ago the Norton-Usher family’s world was turned upside down.

‘Freddie was absolutely fine, completely normal, until one day when, out of the blue, he went limp, completely floppy for about 30 – 40 seconds. We did
not know what was going on. It was terrifying and we thought Freddie had died.’

In that instant Lottie and partner Ed’s world change for ever. An ambulance ride to Brighton General and 8 months of tests later and Freddie was confirmed
as having TSC.

‘It was a horrific year for us,’ says Lottie, 39, ‘having to deal with the knowledge that Freddie has TSC, and deal with his symptoms – the seizures, his
increasingly challenging behaviour, and on top of all that we found ourselves facing homelessness. Looking back now I can see that we spent that year
in shock. I had just set up as a self employed graphic designer, but was not earning much as I had to try to fit it in around Freddie, so on just one
salary, we could no longer afford to live in Brighton, where we had lived for years, where our whole support network was. I can’t describe how awful
I felt for so much of the time, so isolated, scared, and hopeless.’

Lottie sought help from her then-MP Caroline Lucas, who she describes as ‘amazing’. ‘Caroline wrote letters on our behalf, but it was no good. We were
told that we would have to wait possibly years to be offered social housing in Brighton, so we had no option but to move somewhere cheaper.’

A move to a shared ownership property in Bexhill, made possible with financial support from both sides of the family, improved things a little, although
Ed, 32, a tree surgeon, now has to cope with a daily round trip commute of 2.5 hours.

‘Both of our families have been amazing. And something like this brings you closer together as a couple. We kind of go into a little huddle and get on
with it – but then, when you look back at what we used to have and how our lives used to be – well, it can get to you a bit at those times. But then
you look at life today again and you realise that so much is amazing.’

But it was only when Lottie ‘came out’ to her friends on Facebook that Freddie had TSC that things really started to feel just that little bit easier for
the family.

‘After seeing the posts about the #Fight4Treatment campaign on the TSA’s Facebook page, I decided to ‘come out’ on Facebook about Freddie,’ says Lottie.

‘I had one good friend, Debbie, who I could really talk to. But a lot of my other friends sort of drifted away because they did not know what to say. Ed
and I were the first of our group of friends to have children – everybody else was still partying. And, with the new friends I was making through the
mums’ groups I was going to, I began to feel increasingly isolated there as well, because as Freddie’s behaviour began to get more challenging then
I felt uncomfortable being around them.

‘To look at him you would not know that anything is wrong – he is a beautiful child. But he never walks anywhere, he runs, and sometimes he can be really
challenging, hitting out and being confrontational. It is really hard.

‘After I did it, I felt so relieved, and people were so supportive, both within the TSC community, and existing friends online. It’s crazy. As a society
we spend so much time talking about celebrities and the trivia of their lives and yet we are ashamed or afraid to talk about what’s really going on
in our lives and it’s wrong. It needs to change.

‘There’s loads of help out there, especially on the TSA’s Facebook page, and the extremely active Tuberous Sclerosis Mums and Dads page and through groups
for parents of children with TSC. Often it just helps to let off steam sometimes. I just want to open every door to every opportunity, you never know
who you might meet, or what opportunities could arise, which might make all our lives that bit better.

‘After Freddie’s diagnosis Ed and I gave up drinking for a while to help us keep clear headed at all times. And I have started running which I find helps
me so much. Before Freddie’s diagnosis, I had never run anywhere in my life. I hated it! But now, I open the door and I go. You don’t need anything
other than a pair of trainers. Maybe, in a way, it’s a kind of like running away, as it’s just me, and I’m not carrying anything – in my hands or in
my head. But it works. And it means when I come back I am calmer, have more energy, and can think clearly, so I’m much more able to look after Freddie
in the way that I want to.’

After the dark days and weeks that followed Freddie’s diagnosis, after a lot of running, ‘coming out’ online, and meeting with other TSC parents local
to her – again thanks to Facebook – Lottie now describes herself as being ‘in fighting mode’.

‘I don’t have the luxury of being down,’ she says. ‘Recently I have set up my own business, I’ve sorted out the whole mortgage thing and I’m up and on
my toes – and just going for it.

‘I feel like I can deal with everything – but it still gets to you.’

Lottie, a former medical PA to two psychiatrists, advises relatives and friends of parents of children with TSC to think about how they contact them.

‘I personally find phone calls too much sometimes,’ she says. ‘A phone call is immediate. You have no space or room to think. Whereas an email, or a text
message will just sit there. I’ve got more control over that, and space. It is good to talk and very important to talk, but sometimes, especially in
the early days, your friends are to scared to ask what they really want to ask. And, on the other hand, your family will be asking piercing questions.
No-one can win.

‘It’s new ground, in fact it is a whole new reality where nobody’s ever been before.

‘I do feel that something needs to be done to fund extra weeks holidays through employers so that families are able to take a break from the huge stresses
that raising a TS child brings. If parents don’t get a break, they have no time with each other, or themselves, they can’t recharge their batteries,
and can’t be the parents their child deserves.

‘So we just have to try to keep ourselves sane, and happy and healthy. We’ve been dealt a very complex hand by life and the future is terrifying. I worry
all the time how we will cope when Freddy is stronger than us. And I worry so much about what will happen to him when we are not here to look after
him. The long-term is terrifying – so we just keep on, keeping on, taking one step at a time, and meeting up with other TSC parents, which is a Godsend.’

Ed’s story

A quietly spoken, reflective man, Ed admits that he has found coping with Freddie’s diagnosis and day to day care for her ‘quite difficult.’

The 33-year-old tree surgeon says, ‘Freddie being diagnosed with TSC was almost a relief, as it was an explanation. It was an answer. But it was a shock
at the same time.

‘I felt that it was maybe my fault. I felt like I have given it to him, even though there is no history of TSC in our family. I felt so guilty, and still
do sometimes, and that’s really hard.’

Ed has told some friends and colleagues at work about TSC and Freddie.

‘But they don’t really get it,’ he says. ‘They look at Freddie’s pictures on Facebook and they don’t think there is anything really wrong.

‘But after Freddie has a seizure he often gets really angry and that’s quite difficult to deal with.’

Ed says that his way of coping is to ‘get my head down at work, try not to think about it, and don’t talk about it much. Work has been my salvation.

‘My employers have been really good and very understanding. They give me all the time he needs off work to attend hospital appointments, even with very
little notice, although so far, all of my annual leave has been taken up with attending hospital appointments for Freddie.

‘And I’ve got an allotment now, which is also a really good form of therapy. I can go to work, but Lottie has Freddie 24/7. I was surprised at how little
after-care there was for us as parents on the NHS. We were given Freddie’s diagnosis – and that was it really. We were given the website of the TSA,
and left to get on with it.’

Family help, says Ed. ‘Our families are really understanding, although mine live in Northamptonshire which is long way away. My Mum really spoils Freddie
though. My whole family love Freddie so much, they spoil him loads as they don’t get to see him much as they live in Northamptonshire.

‘We’ve got a better understanding of TSC now. We’re always trying to beat it, but it’s still really challenging. It’s really hard. We have a really good
consultant, but I know that I would benefit more from talking about it with other fathers of children with TSC. Talking about it takes the weight off
your chest, and it’s far better if you can talk about it rather than just bottling it all up. But it helps if you have like-minded people as they will
understand far better than others, however well meaning they may be.’

As for the future? Ed says: ‘It’s terrifying, but it’s really positive at the same time. I am worried. There’s the thought in the back of my mind all the
time that something really bad is going to happen. It’s like a dark shadow hanging over us. But I just block it out and carry on.’