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| Alfie Oliver with his pet dinosaur Dave at Martin House children's hospice, near York |
LITTLE Alfie Oliver is sitting next to his toy dinosaur Dave watching a DVD of Shaun the Sheep.
Dave wears a bib and, every now and then, Alfie feeds Dave a biscuit.
We're in Alfie's colourful bedroom at Martin House, the Children's hospice at Boston Spa, about 15 miles from York.
Three-year-old Alfie, from Clifton, is well-known at Martin House as is Dave.
“Whenever Alfie comes to Martin House, Dave comes too,” says Alfie's mum, Tracey. “Alfie thinks it's hilarious that Dave gets all this attention from staff. Dave sits at the dining table when everyone is having lunch and tea and they always bring him a portion of food.”
After watching the DVD, Alfie joins hospice worker Helen Scouller in the colourful art room where they play with some Peppa Pig Fuzzy Felt.
Alfie is a big fan of Peppa Pig. He had a front-row seat when the show came to York earlier this month and this week he is going to Peppa Pig World near Southampton for a three-day holiday with mum Tracey and dad Rob.
The trip has been organised by Yorkshire charity Make A Dream, and the family have been looking forward to it for weeks.
But the family also look forward to coming to Martin House. For them, they say, coming here is like having a holiday.
The hospice is for children with life-limiting conditions and illnesses and covers North, East and West Yorkshire. Eight in ten families using Martin House come for respite, or rest, rather than end-of-life care.
This means the hospice feels more like a “home from home” than a hospital for many patients and families albeit with round-the-clock support from a team of expert medics and loving carers.
Colourful murals cover the walls; the library is stacked with DVDs and books and the play room has everything from computer stations and a table football to a wooden train set and mini grocers.
In here, we watch Alfie and Tracey play at shopkeepers, the three-year-old manning the till while Tracey puts mini packets of cereals and tins of sweetcorn into a bright pink plastic trolley.
“He loves coming here,” says Tracey, at the end of the latest four-day visit. “And so do we.”
Alfie was born with a heart defect and suffers from pulmonary hypertension which affects his lungs and heart. He needs round-the-clock care and is fed through a special tube in his tummy. A second tube, a “Hickman line”, supplies vital drugs to keep him alive. He requires nourishment through the feeding tube every hour and regular oxygen. His condition causes a host of side effects, especially reflux, or heartburn, which prevents him from sleeping well. There is no cure for the condition, only treatments to alleviate symptoms and prolong life.
Most of the time, Tracey and Rob care for Alfie at home, taking it in turns to sit with him through the night; dozing when he does; giving him his regular medicines and feeds; reading him stories when he is distressed; massaging him when he is in discomfort.
Rob also holds down a part-time job and the toll of endless sleepless nights is punishing.
Tracey says: “As a carer, especially over a long period of time, it does affect your physical and mental health. We get headaches and migraines that make us feel dizzy. You can feel quite depressed at times.
“We come to Martin House to have respite; to get some sleep. It makes you feel human again.”
It costs almost £5 million a year to run Martin House and a whopping 88 per cent of that has to come from good causes and charitable giving.
Next week, fundraising comes to the fore as Children's Hospice Week takes place. The challenge this year is for people to dress up as a superhero and make as much money as possible for this good cause.
Martin House is celebrating its 25th birthday this year. It can cater for up to 15 children and their families at a time, including six teenagers in a purpose-built annexe.
Alison Wragg, of the hospice, said: “We are celebrating 25 years which it is a huge accolade to the people of Yorkshire who have supported us over this time.
“Children's hospice week is a great opportunity to remind people of the important way we can support families in need.”
Tracey can't stress enough how vital Martin House is to her family. Although Alfie is under the care of doctors at Great Ormond Street in London, the consultant at Martin House, Mike Miller, now looks after the day-to-day management of his symptoms.
It's a huge relief, says Tracey, having a doctor who knows Alfie and sees him regularly at the other end of the phone and just 30-minutes' drive away.
Alfie's health has deteriorated since Christmas, meaning the family is using Martin House more regularly.
“At first, we came about four times a year but now it's every six weeks,” explains Tracey.
While Alfie is in safe hands, Tracey and Rob can enjoy some of the things other couples take for granted.
“Rob's a runner, so when we come here, he goes for a run. I might go to Tadcaster for a swim or meet a friend for coffee. Last time, we went out for dinner one night.”
During this stay, Rob and Tracey achieved a first a night away without Alfie. Tracey won The Press's SuperMum award, entitling her and Rob to a luxury spa break at Middlethorpe Hall in York.
“It was fantastic,” says Tracey, still beaming at the memory. “We really enjoyed it.”
The couple say they have been on a rollercoaster ride with Alfie since he was born. Doctors have feared the worst many times, yet Alfie has defied them every time, says Tracey. When he first had his Hickman line fitted two years ago, doctors gave him just a few months to live. Alfie's fourth birthday is in July and he is due to start school in September; he already attends nursery at Hob Moor Oaks in Acomb two mornings a week.
“The future is a complete unknown,” says Tracey. “Alfie has far outlived his initial prognosis as well as the second, third, fourth and fifth. We never thought he'd see his second or third birthday and now it is coming up to his fourth.
“We deliberately don't look too far ahead. We live in the moment as carers for Alfie and, whatever the current demands are, we respond to.
“We appreciate what we have got. It's a blessing and we don't see it as a negative thing. We are honoured to see him grow up into an intelligent little boy. We never thought we would see it.”
Tracey says she is particularly pleased that Alfie has managed to go to nursery.
“I've loved to see him go to nursery dressed in his school uniform, he looks so smart.”
She adds: “We make the most of it and take him everywhere despite his illness. He has done loads in his short life. In one sense, he has a very limited life physically, in another sense he has a very full life.
“He's a very special, strong, and brave little boy.”
For more information about the hospice and how you can help with fundraising, visit martinhouse.org.uk
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