The last year seemed to have passed in a flash, I promise I'll get better at posting these updates! There were some big milestones for Toby, from continuing the new genetic treatment through to swimming in the sea, playing his uncle's puppy and getting stronger on his...

Happy new year! Well, it’s really about time we updated this page, so many of you have asked about Toby which is lovely so here goes with a latest missive. The last couple of years have been weird for everyone, at the height of the lockdowns life was both challenging...

The eagle eyed of you will have noticed that there was no update last month, as I am sure it has been for everyone, lockdown has continued to be tough and quite frankly I’m not sure where the time has gone. As we recovered from Covid-19 (confirmed antibody tests on...

At the end of March we all became ill with symptoms of Covid-19, the first few days were a blur as we tried to look after a seizing Toby who we’d deliberately knocked out with lots of drugs to try and stay out of hospital, all the while we felt rubbish too with...

March has been weird for all of us hasn't it? For us the month ended in the worst way as we've all been pretty poorly which resulted in Toby having the worst day of seizures he's had for years. Like everyone in mid-March we were keeping an eye on the developing...

February seems to have disappeared in the blink of an eye helped no doubt by having a lovely week away as a family in Southwold. Our half term holiday didn’t start well unfortunately with Toby having a seizure at school not long before we collected and then another...

I don’t know about you but January felt like the longest month ever and as ever, ups and downs for Tobes. You may have read that just before Christmas Toby was having a lot of seizures so we had to postpone our Christmas plans, the same happened on New Years eve so...

Happy new year to you. I hope you have had a lovely time over Christmas. December is often a mixed bag for us and this one was no different. Throughout the month we saw friends, had Christmas “dos”, a night away with friends whilst Toby was in Helen House, nights out,...

November has gone in a flash and I’m pleased to say partly that’s down to Tobes being on better form and more importantly, sleeping better. We’ve removed the padding (and the dreaded Velcro) from his bed which seems to have had the desired effect of him not ripping it...

You may recall that we ended September in hospital after a bad day of seizures for Toby, whilst there we had a call from Helen House to see how he was as we had a stay booked with them later that week. After hearing that we were a bit worried they kindly offered for...

Summer is nearly over, not just the weather but the holidays too, it’s been a long couple of months. Sadly the last couple of weeks haven’t been great for Toby, he’s had some of the worst...

It’s been a busy month for us which is usually the sign of a good spell for Toby and it’s not been too bad, lots of people, variety and love as usual. The month started with a visit from Karen from Scotland which is always lovely, especially as she brought cheese! We...

I know it’s late again but it’s been a busy week since the end of May as Tobes has been in hospital for an operation but more of that next month… May saw several firsts, not all of them good. As you pull into Toby’s school there’s the usual parking spaces but also a...

The eagle eyed of you out there will have noticed that there wasn’t an update in March, with the stress of life I just didn’t get chance, apologies. At the end of March we were having stress with the extension, there were issues with the water in the wet room not...

We’ve found February to be a tough month but before that, let’s celebrate the good times. At the beginning of February we took Tobes to Center Parcs for a few days and had a lovely family holiday. Obviously the main attraction of CP is the ‘Sub Tropical Swimming...

Apologies for the late update, life overtook us and I forgot to write an update but a few people have been in touch to check all is ok so I thought I ought to say hello! The good news is that the ‘new’ drug that Toby started last year is helping to reduce the number...

Happy New Year! I hope you all had a lovely Christmas with family and friends As 2018 is over we thought it would be good to look back over the last twelve months and talk about the highs and lows with a view to a better 2019, so, in no particular order; Toby started...

This month saw two major events for us, building work commenced and a certain someone had a birthday! Toby’s fifth birthday was something we never thought we’d see at points over the years but he’s here, doing well and most importantly, able to eat his cake! It’s the...

Last months update was pretty doom and gloom and it’s so easy for us to get caught in a spiral of feeling pretty down. It can also change at the drop of a hat. Just a few days after publishing the last update I bumped into a couple of friends in the chemist in town,...

The first day of September wasn’t great for Tobes, being a Saturday he was indulging in some washing machine watching, a favourite pastime, when he suddenly went into two minute seizure. Kim was all over him making sure he was breathing and wasn’t turning blue by...

The start of August was terrible for Toby seizure wise, he was having one, two or even three fully convulsive seizures a day which creates a downward spiral as he gets over tired and can’t cope the next day so the cycle continues. He was at the play scheme at school...

I’ve really struggled writing this update, it’s been hard to find the right words to describe where we are now as life has once again changed. In the early years everything was about medical emergencies and dealing with highly stressful life and death situations...

  This is going to be a short update as we want to focus on really saying ‘thank you’ to some incredible people, here’s why: On Friday we returned from 3 days away in Italy, we’d had a lovely city break in Bologna eating lots of good food, drinking the local wine and...

After a pretty good month in March, the last 8 weeks couldn’t have been more different. The reality of Dravet struck again with another change to Toby’s seizure pattern. Not only have they increased but he is now having half of his seizures when he is asleep either...

It’s been a tough month for all of us, Toby’s seizure pattern has changed and he’s started having seizures in his sleep. The first seizure happened just before 5am on a Saturday morning, we had the monitors on as usual and woke to the horrible noise Toby makes when he...

March started in a scary way for us, not the usual seizures but the ‘Beast from the East’ which made a trip to Helen House and beyond a little stressful. Getting to Oxford was ok, just, and we checked Toby in and headed off as quick as possible for the short 30miles...

February had lots of positives but when the negatives came they caught us off guard and really shook us both up. Lots of smiles and laughter  Toby has been on good form, he’s still eating bits of crunchy, textured foods with lots of flavour, that’s me trying not to...

I know I often say that the last month has been a rollercoaster, it’s an overused phrase but it doesn’t just demonstrate the severe highs and low we experience but also the speed of change and the physical and mental rush of life with Toby. Christmas was ace, he was...

Happy New Year to you and all your family, once again, thanks for keeping up with us over the last year, it’s great to know you’re there. Dare I say it but December has been a great month for Tobes which considering how ill he was at the end of November when he was...

I really don’t know where to start with this month’s update, so much has happened and so many people have been incredibly kind and generous. Let’s start with the not so great stuff, for the last week and a bit Toby’s had a really bad cold and chest infection, he’s...

I realise I’ve not written an October update and apologies for that, Life’s been a little tough over the last few weeks as Toby’s seizures have got worse. The fully convulsive ‘tonic clonic’ seizures have increased in frequency and duration and seem to be impacting...

We’re very lucky that people often ask “How’s Toby?” but we find it such a difficult question to answer, right now, he is having a fully convulsive seizure every day, which means as well as the seizure he's unconscious for 40 mins afterwards, and he has a handful of...

I’m going to start this update with thanks, thanks to all of you who read this and support us in so many ways. Toby’s all terrain buggy is suffering with overuse and about to give up carrying him, his oxygen and rescue meds but thanks to your generosity we have Toby’s...

Back in April we met with Toby’s neurologist and agreed to reduce one of his medications, we didn’t have great seizure control and all the meds have side effects, very broadly, one hinders his mobility, one his speech and one his eating, to reduce any of these side...

Through June we’ve continued to reduce Toby’s clobazam, one of the meds that helps ‘calm’ his body and brain down to reduce seizures. It’s a stronger version of Valium, so you can imagine what that does to him. By reducing it we were hoping to see a more alert,...

Dare I write this? It’s been a good month….deep breath, everyone still ok? Toby has still had hundreds of seizures but as a family, and a couple, we’ve cracked on and done lots of things, from Kim’s special birthday weekend away in the Cotswolds while Tobes was in...

Apologies for the late update, we've been away celebrating Kim's 40th whilst Toby had fun in Helen House. We dropped him off on Friday and it was lovely to see how happy he was there and how genuinely pleased for us all the staff were, they see it as a great thing...

I’ll be the first to admit that last month was a little doom and gloom so having a positive start to March was what we all needed. My cousin and family came for the weekend and we were a little nervous, Tobes hadn’t been on good form and maybe a couple of kids doing...

Since our last update it’s been an emotional rollercoaster, I’ll tell you why in chronological order as it demonstrates what we go through on a day by day basis. It’s a long post, bear with me if you can. Buggy The first week started well with a great appointment with...

Never good to start with an apology but it turns out people do read these updates and noticed the glaring fact that I didn’t write one at the end of December, sorry! No excuses, life ran away with us and before I know it the tree was down, decorations packed away, the...

It’s been an emotional month as there’s been lots of reminders that Toby is different, from spending his birthday in hospital, not going to friends’ birthday parties and an appointment to discuss his first wheelchair. Add in a higher than average number of seizures...

This month it’s been all about food! Sadly, Toby still isn’t interested in food at all but prompted by a couple of people who care for him we’ve been exploring the ‘blended diet’ which kinda does what it says on the tin, blended food pushed through his Mini Button...

I hate starting these updates with 'it's been a tough month' as it feels very repetitive but I guess that's the nature of a condition like Dravet, it changes all the time and very rarely for the better. During one antenatal class I remember a soon to be second time...

October has been a tough month for all of us and we’re struggling to stay positive, we're tired and running on empty even though compared to this time last year Toby’s seizures could be said to be better but the reality is, it’s just different. Last year we were...

It's my own fault, I know it it. Starting off last months update with 'it's been a good month' was tempting fate just too much. On Friday the 1st May we had a long meeting with Social Worker Sue and a lady called Gill from the Continuing Care team, Toby was on good...