For mum Belle, walking through the doors of Helen & Douglas House feels like a weight being lifted from her shoulders. Following her son Rory's diagnosis with a rare and life-limiting form of epilepsy, the hospice has become a place of support, friendship and joy for them both.
Today, Belle is sharing their story and why she's running her first Oxford Half Marathon to give back to the team that continues to support her and five-year-old Rory every step of the way. Read on to learn more.
“If I could sum up Helen & Douglas House in one word, it would be ‘joyful’. It is such a happy place for me and Rory and when he is here, he doesn’t stop giggling.”
When Rory was 16 months old, what initially seemed like a childhood illness turned out to be something much more serious.
Mum Belle recalls, “Rory was poorly at home and had a temperature for a few days and I thought it was just a typical toddler illness. What I didn’t know was that he was just a few hours away from having a massive seizure because he had been fighting bacterial meningitis.”
Whilst at the GP surgery, Rory started having a seizure in the waiting room and was rushed to the John Radcliffe Hospital in Oxford. Despite treatment and medication his seizure lasted for three hours. The prolonged seizure left Rory with a brain injury and ultimately resulted in the diagnosis of a rare life-limiting form of epilepsy called Lennox-Gastaut syndrome (LGS). Every day, Rory experiences between 40 and 60 seizures, some barely noticeable and others causing him to suddenly fall to the ground.
Belle was referred to Helen & Douglas House and soon received a visit from one of the hospice's outreach workers, who explained the support available and invited the family to visit with Rory.
“When I first heard the word hospice, it was a really scary word. I thought we aren’t there yet, we aren’t towards the end of his life. But I couldn’t have imagined what it was really like. Walking through the doors of Helen & Douglas House is like a weight being lifted off your shoulders. It’s like coming home. I know that he is safe, I know that he is loved, and I know he has a lot of dignity here.”
Helen & Douglas House, the right place for Rory
Rory and Belle have now been coming to Helen & Douglas House for over a year, spending time together at the hospice and attending family events where they can make special memories.
“Rory loves anything with wheels like cars, vans, farm machinery and trains, so coming here is perfect. We actually donated his train set, his second birthday present, and there are so many small-world toys and things he loves to play with.”
“The garden is such a blessing. I don’t have a garden at home and what the volunteers and staff have created is just magical. It is full of tiny little things to look at like statues and ornaments. There is wildlife like butterflies, or you can listen to the birds.”
“On Wednesdays we come when volunteer Piano Paul is playing and singing because Rory also absolutely loves music. And although Rory may sometimes look like he isn’t listening because he is playing with toys, at home we sing a song we learnt here from Piano Paul ‘One, Two, Three it’s Good to be Me’. That song just makes my heart feel very happy because every child in the world is special, but these children are precious.”
“Nobody can say what Rory’s future looks like. And as far as I’m concerned, he’s smashing it. As parents we want our children to be happy, feel safe and be loved, and even when your child has the most hideous diagnosis you can still achieve those things with the help of Helen & Douglas House.”
“My path and my life are not what I had imagined. Nevertheless, being offered the chance to come to Helen & Douglas House is like growing roots. It’s somewhere you didn’t think you were ever going to be, but now that we are here, we make every minute count.”
Running the Oxford Half Marathon
“Running the Oxford Half is going to be enormously challenging. But I'm determined to give back to a team that keeps showing up for Rory and me.”
Belle has signed up to run the Oxford Half, her very first half marathon to raise money for Helen & Douglas House.
“I’m not going to lie, I am terrified! But it matters to me. I want everybody at Helen & Douglas House, from the lovely ladies who cook dinners, to the clinical team, volunteers and fundraisers, to know how much Rory and I value you and how much you mean to us.”
“The exercise has really been transformational for my mental state as well. As a mum and a parent carer, these roles can dominate my life plus I also work part time. So, it’s nice that I can keep popping on my trainers and have a bit of me time.”
