Continuing with our Help Your Britain campaign, today marks the 14th user-nominated charity to be showcased on Bing.
There are more than 187,000 registered charities across Great Britain with a story to be told, many of whom will never be heard due to the lack of resources at their disposal. We’re shining the spotlight on these unsung British heroes as part of our long-term Help Your Britain Campaign. For more details about the campaign please go to: www.bing.com/HelpYourBritain.
Today we are highlighting Shooting Star and CHASE and the work it does providing hospice services for over 600 families living in Western London, Surrey and West Sussex…
Every new parent struggles finding time for themselves and each other. Imagine how much that is magnified for a couple looking after a very sick child. Evelyne explains how Shooting Star and CHASE’s Hospice at Home and respite stays make her and partner Thomas even better parents.
Evelyne’s son Tuffel defied all medical odds when he was born 15 months ago.
Everything seemed to be on freeze frame as Evelyne struggled to register the consultant’s words about her newborn son – “We don’t think he’s going to make it.”
As her partner Thomas and mum broke down in tears, she just stared at the consultant. “I remember thinking this isn’t happening… can’t be happening to us,” she says.
“I asked him if there was any hope at all. When he said there was always a glimmer – we took that glimmer of hope and built on it.”
Tuffel’s scan had shown a progression of inflated stomach and loops of his bowel. After he was born, he was placed on Evelyne’s stomach for five minutes before being whisked away.
“I was in a daze – a mother who didn’t have her baby to hold,” says Evelyne.
At just 12 hours old, he underwent a four-hour operation when surgeons discovered his small intestine had died away completely and they had to cut out two metres of tissue. Tuffel was completely dependent on intravenous feeding (TPN) which Evelyne was warned would be a risky solution and had no guarantee of success.
Tuffel was in the high dependency unit at St Thomas’ Hospital for five months and then eventually left hospital after eight and a half months.
This was a micacle, says Evelyne, “We were originally told Tuffel would be in hospital for four years!”
Although Evelyne longed to take her baby home, she was daunted leaving the safety net of hospital. “We didn’t know what Tuffel would be like at home,” she says.
Finally back at home last September, the couple juggled sleepless nights and the high end care of Tuffel’s TPN. He could eat small amounts of smooth food, which had to be drained into his gastronomy bag.
In November, Tuffel underwent surgery to attach the colon to the remaining 10cm of his bowel, meaning he no longer needs a bag.
“This in itself was another miracle,” explains Evelyne. “Now he only needs to be hooked up to be fed through his Hickman line(venous catheter) overnight. We say he’s being charged like a mobile phone,” smiles Evelyne with the irreverent sense of humour that keeps her going.
She does night care five nights a week and Thomas does weekends. “My sleep is interrupted between three to seven times a night, making me feel permanently jet-lagged.”
The home care is a lifeline. At first she relished finally having her baby to herself, but soon realised they needed help.
“The hospice’s support has been phenomenal,” says Evelyne. “I’m humbled by and grateful for all the people who make this possible.”
Every two months they have a three-night respite stay at the Hampton hospice and have a three-hour home visit once a fortnight from a Hospice at Home care worker, Kim, who takes Tuffel out to the library or for a walk.
“Tuffel comes first, but finding time for our relationship is challenging,” says Thomas. “Our three nights at the hospice, when Tuffel is being looked after by the nurses, means we can sleep, share a bed and feel like a couple instead of carers.”
“And Hospice at Home gives me a chance to feel like me again, not just Tuffel’s mum,” says Evelyne. “I have a different perspective now but I still need my own identity – and I want Tuffel to see that, too.”
As Tuffel snuggles into her neck, she says: “I feel blessed as he’s so sweet-natured and loves cuddles.”
“Like any mother, I want my child to be as healthy and happy as he can possibly be,” says Evelyne.
“When he was born I told Tuffel that he was very welcome in our world and we wanted him to be with us, but that if he had to go, he could. He chose to stay with us.