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 during the day or in the early hours of the morning.

This change, which is common for kids with Dravet of Toby’s age, has hit us lik

e a truck. Before it happened it felt like we had found some sort of balance in our life, or as much as we ever could do. We had started to sleep better and be more comfortable leaving Toby with our parents and trying to enjoy life a little more. Unfortunately the increase in seizures, between one to three tonic clonic seizures a day, and seizures when he has a sleep has filled us with fear of leaving him and left us exhausted from constantly listening out for a seizure every minute of every day and every night when we are with him.

The only way we know he’s having a seizure when he sleeping is by a change in his breathing. We’ve tried every seizure alert product on the market and nothing works reliably. Our friend Karen who came to visit us in May was shocked that he started to have a seizure when she was watching the video monitor during the day but his body hardly moved, only his breathing changed. This reliance on listening has made us hypersensitive to any noise which is pretty difficult when you live in the middle of a town. Our heads hurt and bodies ache. As a result I’ve been poorly with a fever and Kim has been signed off work to try to help her recover and regain her strength. A few weeks ago Helen House stepped in an offered us a couple of nights emergency respite which was brilliant of them and allowed us to rest and switch off for a couple of nights much needed sleep.

In a few weeks time we are heading to Bologna for a few days while Toby is at Helen House. Hopefully it’ll be a good break for all of us and a chance to recharge our batteries. This extended break is so precious and only possible because of the service Helen House offers which is financially struggling. A special thank you to Dee who has run three half marathons in May and raised over £1k. We are so grateful to you.

We are very aware of how lucky we are in terms of the help we get. We see so many single parents who have a child with Dravet and honestly have no idea how they get through each day. Without the daily support of Toby’s grandparents, our nurses and carers, respite at Helen House, the Redway School and our ever loving family and friends we would be in a lot worse situation. We currently feel broken but know that Toby is dearly loved by those around him. One of the benefits of being developmentally delayed is that he has no idea what is going on and is saved the pain the rest of us are feeling.

There were moments of happiness and joy, Toby enjoying and ice cream with his grandpa on a family day out, pulling a chair out from the table and crawling onto it as he heard the sound of the microwave cooking his dinner and sharing a Sunday dinner at Nanna’s house.

In half term Kim’s school friend Helen and her lovely kids Charlie, Johnny and Katie visited from Whitley Bay staying in an AirBnB in town. I can’t explain the look of joy on Toby’s face when they first walked it. They all adore each other and Helen’s kids have such a special way with him. It was wonderful to see them with him. It clearly did him good as he actually didn’t have a seizure the whole time they were here. Clearly Geordie friends are the medicine he needs. Helen has also raised an incredible £700 for Toby’s Trust by completing a gruelling triathlon on one of the hottest days of the year. John Gibbard also helped raise funds by doing an ultra marathon on the same day. Incredible, thank you.

With planning permission submitted for creating a bedroom and bathroom downstairs for Toby we are so grateful for all the support we get. A special thank you to Colin, Tuppence and Kindra for your kindness and generosity, it will make a big difference.

Thank you to Charlotte and Keith for all the food, sometimes not having to think about dinner really is a blessing, you’re very kind and thoughtful.

Here’s hoping next month’s update with strike a more positive note and Toby and us with get a bit of a break from this horrendous illness that impacts Toby and all those that surround him with love.