It’s Father’s Day on Sunday 21 June and Toby’s dad, Tim, tells us about his ideal day which he hopes will starts with tea and biscuits in bed and reading stories to Toby. However, they can’t always plan for this as they never know how Toby, who has a life-limiting condition, will be feeling or whether they will have been up all night caring for him.
Toby was born in 2013 and lives in Buckinghamshire with his dad, Tim and mum, Kim. Tim’s first Fathers Day as a dad was in 2014, when Toby was just 8 months old. At that time Tim described Toby as a smiley, happy baby boy, who has also been having major seizures. The doctors were struggling to diagnose his condition, but not long after they found out he had Dravet Syndrome, a rare and severe life-limiting epileptic condition.
Fast-forward to today, Tim tells us what life is like for him as a dad to a child with a life-limiting condition:
‘Milestone dates like Father’s Day, Mothering Sunday and even Birthdays are difficult for us to plan and celebrate, as everything depends on how Toby is on the day. Toby’s severe life-limiting form of epilepsy due to his condition, Dravet Syndrome, it means we never know what a day or night might hold. On a bad day, we may be up at 3 am to find him having a seizure, so we’ll be giving him oxygen, rescue breaths and medication throughout the night, then spend the rest of the day in a sleep-deprived haze. On a good day we may wake up, surprised that it’s nearly 7 am, to the sound of a happy little boy who just wants to smile, cuddle and enjoy time with his Mummy and Daddy.
If we can, we try to plan for special days like Father’s Day. Hopefully, there’ll be presents and cards and the promise of a lie-in, or tea and biscuits in bed. Toby loves reading his books, so there will be all three of us in bed, singing songs and reading our favourite story for the ‘eleventy billionth’ time, all whilst guarding the biscuit tin in case Toby’s makes a dash for my favourite ginger biscuits!
Over the last six years, we’ve learnt to celebrate every day as we have no idea what tomorrow might bring. Toby’s condition means that Sudden Unexplained Death by Epilepsy (SUDEP) is common, so we treasure every one of those smiles, hugs and will gladly read ‘Pirates Love Underpants’ one more time.
Helen & Douglas House is more than respite for us, it’s a sanctuary, it’s family and it’s a hotline to some of the best medical professionals in the country. We were lucky enough to be the last family before lockdown to visit Helen & Douglas House for respite care. At the time everything was very strange and the whole country was entering into a new, scary world and little did we know that less than two weeks later we’d all be incredibly poorly with symptoms of Covid-19. During Toby’s respite visit we had been given expert advice from the in-house doctors as to what to do if he caught coronavirus. But when it struck we were terrified.
Physically Toby is in reasonably good health at the moment, so we weren’t desperately concerned about the chest infection side of the Covid-19 symptoms. It was the fever that scared us as this is a major seizure trigger for him. As predicted, once Toby fell ill he started having seizure after seizure, each one getting a little worse and a little longer. We were following the advice, and trying hard not to call an ambulance, but we were at the end of our tethers. We were suffering from Covid-19 symptoms ourselves whilst at the same time acting as medical professionals for Toby. It was just too much.
One call was all it took, within minutes we were talking to senior doctors at Helen & Douglas House who gave us the advice we needed on drugs and protocols and tips to keep up going. Those calls kept coming over the next few days as we nursed Toby through the worst of it. We believe that if we hadn’t had medical support from the hospice then Toby would have ended up in hospital, something we just couldn’t face in our poorly state. We are so grateful.
Lockdown has been a difficult time for everyone. But for us, and families like us, it has been hard. We usually rely on specialist support from the school, respite nurses and grandparents, who all keep us going on a day to day basis and this has all, understandably, ceased for the time being. It’s been a drain on us physically, mentally and emotionally, but we’re all still here and are still smiling and we are looking ahead being able to visit the hospice again. In the meantime, we will be hoping for a good day on Father’s Day this year and I hope that Toby doesn’t pinch too many of my favourite biscuits!’
From everyone at the hospice, we hope that Toby and his Daddy have a very happy Father’s Day, as well as anyone else celebrating with, or remembering, their dad’s or father figures. We are looking forward to when it is safe enough for Toby and his family, and our other respite families, to come to the hospice again.
Buy a virtual gift this Father’s Day to support children like Toby and his Dad
|Our virtual gifts that are now available for you to buy for Father’s Day. Sometimes it is really hard to think of original gift ideas, especially for the person who has everything. With our ‘Gifts that Give Twice’, the choice is easy.
You can feel proud that you have not only put a smile on the faces of our children and their parents, but also on the face of the person you are giving one of these precious gifts too.
Pick the gift you would like, whilst supporting your local children’s hospice. When you buy one of our virtual gifts you will receive a lovely personalised certificate to email or message to your Dad to print out and display.
Thank you for supporting Helen & Douglas House. These gifts are truly priceless to our children so thank you.