‘It was so special reading people’s kind words’
Vanessa’s story
The first time I interviewed Vanessa Hilton for the Experience column I Have To Spend My Life Lying Horizontally, there was a flatness to her tone, a matter-of-factness that reflected her forced acceptance of her situation. Hilton has now spent more than a decade battling the side-effects of a spinal fluid leak, which results in low spinal pressure and sees her unsupported brain sink into her skull. It triggers a litany of symptoms including pain, double vision, dizziness and tinnitus. A cure has yet to be found.
As a result, she has adapted her entire life to the one position where she finds some relief: lying down. What she dreamed of, however, as her days on the sofa turned to months, then years, was a recumbent tricycle. With adaptations, an Ice Adventure HD trike would allow her to resume her cycling hobby from a semi-reclined position and give her a level of freedom she lost long ago.
After her story was published, donations to her GoFundMe flooded in, along with messages of support and encouragement from readers. Hilton surpassed her target of £7,500 – the cost of the bike they had already committed to with a £2,000 deposit – and reached more than £9,000. The additional funds have been donated to a disabled cycling charity.
“I was blown away, and so humbled by the people who’d put the time in,” Hilton tells me. “The financial support was so appreciated; I started to feel excitement as I realised this was actually going to happen, and relief that we hadn’t wasted anyone’s money. But it was also so special reading people’s kind words, and hearing stories of their own leaks.”
At the end of February, along with husband Paul, Hilton went to collect her new bike. The pair spent the entire day at the Saddle Safari cycling shop in Marlow, with dedicated staff checking and rechecking that it was perfectly suited to her body and needs. The next day, the couple took it to the bridleway leading to their allotment. “We had friends with two little boys visiting, so they were chasing me down the path. The bike can go as fast as you can pedal; I think I’ve reached 26mph so far!” she says. “The kids were running at my sides, trying to keep up and squealing with joy as we went.
“I’ve used it nearly every day since,” she adds, smiling at what she’s just heard herself say. One highlight was visiting an ice-cream parlour with a friend; another was finding an Italian cafe down a cycle path and eating freshly baked focaccia, alfresco. “I can’t put into words how liberating it’s been,” she adds.
Hilton is now focusing on building up her stamina to take her further still; she has her sights set on a local wild swimming spot. More surgeries lined up for this year will keep her in the country, but she hopes next year to take the tricycle abroad for a holiday with Paul.
As our catch-up call comes to a close, I tell her how different her voice sounds now. “I feel different,” she replies. “I’m happy.” GH
‘He was amazing at taking everything in his stride’
Olly’s story
When I catch up with James, he’s on the train home to his wife, Laura, and sons in Ackworth, having spent an evening with clients in a building overlooking Leeds General Infirmary. Three years ago he’d spent 47 consecutive days there, isolating in a 15 sq ft room with his toddler, Oliver.
Olly’s diagnosis of high-risk stage 4 neuroblastoma came when he was four years old, just before Covid-19 became a pandemic. He needed stem cell treatment and high-dose chemotherapy as an inpatient, meaning that the family were forced to split in two. Laura stayed at home with their two-year-old; James and Olly moved into the hospital.
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After Olly’s discharge, many more outpatient treatments followed – but one year after his diagnosis, Olly was declared cancer-free. It was good news in more ways than one, as it made him eligible for a clinical trial in the US. A vaccine in New York – given via seven injections over the course of a year – would reduce the chances of a relapse in a cancer with a very high rate of recurrence. The family had already been fundraising for months, hanging their hopes on that all-clear. In spring 2021, they took their first flight to New York, this time as a family of four.
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“Even when he was anxious about having more injections and the side-effects, Olly was amazing at taking everything in his stride,” James says. “We celebrated his final vaccine, a year after we had begun, by finally exploring New York properly, outside the hospital walls; we went to Yankee Stadium, Brooklyn zoo and Coney Island to see the fair.”
Olly is now seven and loves playing football and rugby. Asked to describe him, James says, with emphasis, “A happy, strong, beautiful boy.” GH
‘It allowed me to start again’
Zach’s story
Zach Small and his daughters, Anua, nine, and Willow, five, were shipwrecked when the boat they lived on hit a sleeping whale. They lost everything as their catamaran sank in the Atlantic and when Zach, a widower, told me the story of their rescue for an Experience column last year, they had only just found their way back to Britain and his mum’s house, near Birmingham, which he had left as a 20-year-old in pursuit of a life at sea.
Donations to the family’s crowdfunder page rocketed to almost £20,000 after their story appeared. “It allowed me to start again. I got a truck and tools and a job,” says Zach, a carpenter. “I felt honoured and inspired that strangers were willing to help get me back on my feet. It restored my faith in humanity.”
It also allowed him to settle his daughters: “My mum has been a rock. She’s home schooling the girls, which is what they’re used to, and they’re going to dance classes and forest groups. It has given me the freedom to work and not dwell on it all too much. Busy hands make for a quiet mind.”
Zach’s wife Rosie died of breast cancer when their daughters were aged four and one. He and Kim, his partner at the time of the shipwreck, have broken up since their return to the UK. Zach tells me: “I left Britain when I was young, in search of adventure, last returning with Rosie, before Anua was born. It has taken all these years away to truly appreciate what a fantastic place this is. These past few months, I’ve found peace and contentment.” He still harbours dreams of returning to the ocean, but for now, he says: “We’re looking for somewhere of our own to live, in Wales, near the sea.” DL
