Toby has Dravet Syndrome, a severe, life limiting form of epilepsy that also impacts his development, muscle tone, appetite and ability to talk, what is doesn’t impact is his gorgeous smile and enjoyment of the simple things in life.
To read about the first few months of Toby’s life and how our difficult journey with Dravet began please click to read Toby’s Story.
This website is evolving and growing but primarily is a way of us to tell you what’s going on with Toby on a monthly basis as way of us saying thank you to all the financial, physical and emotional support we get from all of you.
As a way of helping other parents of children with Dravet, epilepsy and everything in between we’ve been writing reviews on some of the equipment we’ve used along the way to hopefully help other people form an opinion on whether it would help them or not. Please get in touch if you’d like more information on anything we’ve reviewed.
How it all began
Helen House, our journey. Toby was around nine months old when we were referred to Helen House, he was having weekly seizures lasting over an hour, we were having almost daily ambulances to our house and ending up in hospital weekly for days at a time. It was...read more
Latest months update
A good friend of ours found the Embrace watch on the crowdfunding website Indiegogo not long after Toby started to have seizures, it seemed like the miracle device we were searching for to help keep Toby safe and to alert us or carers when he had a seizure. We...read more
We welcome any donations to help support Toby in his fight against Dravet Syndrome.
If you are sponsoring one of the amazing people who do fab things for Toby please put their name as a reference so we know who to thank.
As Toby’s Trust isn’t a registered charity we can’t use the likes of Just Giving or Virgin money however you can donate by clicking here
Toby’s Trust has a dedicated bank account only accessible by Trustees, the details are:
Sort Code: 205744
Account number: 03377385
This is the best way to get money to Toby’s Trust as no fee’s are charged by the bank or PayPal.
Why a Trust?
Toby fights the devastating effects of Dravet Syndrome every day, as does everyone close to him. Not only does he have hundreds of partial seizures throughout the day but he suffers from life threatening tonic clinic seizures a few times a week when he often stops breathing and always requires oxygen. The impact of Dravet is not just the seizures, it always means he has significant developmental delays that increase with age.
Toby no longer eats so is fed through a tube in his stomach and he doesn’t talk or walk, he does however smile a lot and has an infectious laugh. Toby is a very determined little fellow so maybe one day he will does these things but in meantime he requires additional help to support him both with his physical and mental development.
This is where Toby’s Trust comes in. The funds raised by our family, friends and local community give us the opportunity to get Toby and the family the help we need. So far we’ve been able to buy a specialist buggie, seizure and breathing alarms and a fantastic chair that gives him the additional support he needs, which all makes life that little bit easier to handle.
With the support of our wonderful family and friends will do everything we can to support Toby as he grows and develops so that he has every chance of making the most of his life. Having the ability to provide him with specialist equipment, sensory toys, alternative therapies and respite care will help us do this. The Trust is set up to fund as much of that as possible.
We have set up an official legal Trust with an independant Trustee who oversees any spending from Toby’s Trust fund. All the accounts are compiled annually by an accountant and it can be audited by HMRC so everything is transparent and clear to see.
We opted for a Trust rather than a charity as the time and administration required to set up and run a Charity is very onerous and in order to qualify a Charity must help more than one person. We want to pour our energy into Toby, not paperwork.
All of Toby’s monthly updates
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...read more
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...read more
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...read more
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...read more
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...read more
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...read more
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...read more
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...read more
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...read more
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...read more
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...read more
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...read more
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...read more
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,...read more
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...read more
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...read more
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...read more
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...read more
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...read more
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...read more
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...read more
Sorry for the late update, the end of the month came and went in a flash, and what a month it has been. The biggest thing this month is that Toby has started school!! Ok, it's' a nursery class but it's in a proper school with big kids, buses and a dinner hall. I...read more
Regular readers will know that over the last few months Toby’s ‘partial’ seizures have progressively been getting worse, increasing in length and duration till the point he’s having a seizure every minute or so during bad times. Last month we spoke to the neurologist...read more
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...read more
Another month gone and sadly it's not getting easier, Toby is still having around 100 seizures a day lasting from one to ten seconds each which seem to be causing him more distress and pain as he's crying out, he's also having fully convulsive seizure where he's out...read more
Sorry to say May has been tough for us and rubbish for Toby. We started May with a trip to Helen House that we were really looking forward to as my Mum & Dad had kindly offered to stay with Toby in the hospice while we had a couple of nights away in nearby Woodstock....read more
Wow, what a month. I’m sure you are all the same but time seems to be flying by and writing all this stuff down just highlights how much is going on when it feels like the weeks pass in a blur. The month started on a high, we started having respite for a few hours on...read more
We started March in a brilliant way. Toby had a physio session at the hospital booked and we decided to both take him as he wasn’t on brilliant form and it’s always easier to cope when we’re together. Toby was as keen as ever to get into the waiting room where they...read more
Where did February go? Blink and you missed it! In part I think it went so fast for us as we were so busy with lots going on that it doesn’t feel like we stop, much the same as most of you reading this I’m sure. I always feel an element of guilt writing these posts,...read more
Is it the end of January already? How did that happen? Seems like a lot has happened since Christmas, as ever, some good and some not so. The first good news came early in the month for us in the form of AMEGREEN, an agency that had agreed to take on a care package...read more
Happy New Year! Did you have a good Christmas? I hope so. It’s a difficult question for us to answer, we certainly spent time with friends and family, ate too much and had lots of presents but did we enjoy it? Kind of, but the daily partial seizures, the threat of big...read more
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...read more
Apologies but I can’t open another update on a positive note, every time I write about good stuff that has happened recently life throws a curve ball and it all goes a bit pear shaped. After I’d posted the August update we had a good weekend with Toby although Kim was...read more
It’s been a pretty good month and it feels nice to write that. There have been some lows, there always is but there’s been a lot of highs which makes everything feel better. We started August with Toby recovering nicely from his PEG operation and us getting used to...read more
It always amazes me when I write these updates how much goes on in a month, it often feels like it flies and if we blink we miss it but taking the time to reflect on some of the memorable things that happen is really cathartic and reminds us of all the positive things...read more
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...read more
Dare I say it but April hasn’t been too bad for Toby, although I’m touching wood as I write this. Whilst he hasn’t had any prolonged seizures this month he does tend to have at least one or two short tonic clonic seizure every other day. They usually last less than...read more
Brace yourself, it's a long one, get a cuppa or better still a glass of wine then sit back and read on.... March didn’t start well for us, we all had terrible colds with hacking coughs and I was still recovering from my hernia operation and couldn’t lift Toby at all....read more
Blink and you miss it, that’s what February felt like for us! Toby’s seizures have been fairly consistent with one to three 2 to 5 minute seizures most days, difficult but more ‘manageable’ (it’s all relative) at home as we didn’t need to call an ambulance although he...read more
A new year and a change for Toby. Toby’s seizure pattern has changed and rather than lasting an hour or more they are now 1-5 mins which is good as he doesn’t require the rescue medications, ambulances or trips to hospital however it’s a double edged sword as the...read more
We ended November and entered December in a desperate place, all of Toby’s seizures were lasting over an hour and were increasing in their frequency and often occurring during the night. After a weekend of hundreds of partial seizures and a day where we administered...read more
November was another month of highs and lows for us, the main high being Toby's birthday! Where has the past year gone? Difficult to believe that our little boy has been with us for a year already and what a year it has been. Over 100 ambulances, over 20 hospital...read more
What a month! Whilst the number of seizures Toby has had has reduced the length and severity increased dramatically. The poor little boy had 3 seizures (one every seven days almost) that lasted over an hour and several around 20mins, the longest being 71 minutes which...read more
September has been a mixed bag for Toby and us on many fronts. We've been trying to get Toby into a nursery so that he can be around other children to interact and learn like most other children do. Sadly due to his condition it's a lot harder than you would think as...read more
I know this site is pretty new but Kim and I wanted to ensure we carried on keeping it up to date so what better way than a monthly progress report of sorts? August has been, relatively, a lot better for Toby. We had nearly two months when he was having major seizures...read more