VALERIE Simpson cannot wait to get her hands dirty – which she admits is odd for a woman who knows how vital germ-free zones are for the children she helps every day.
But when she has a spade in her hand and breaks the earth on land in Craigour to mark the beginning of construction work on a purpose-built home for her charity, she will have realised a long-held dream.
She and her husband, Bill, set up CCLASP (Children with Cancer and Leukaemia Advice and Support for Parents) two decades ago after their six-year-old son was diagnosed with acute myeloid leukaemia and they discovered a desire to share their experiences with other parents going through the same heartache.
They have never forgotten the horror and worry of being told Robert needed a bone marrow test and the fear which gripped them when told he had leukaemia and just a 30 per cent chance of survival.
After a bone marrow transplant from his older brother, gruelling chemotherapy and radiotherapy and months in hospital, Robert eventually recovered.
But it was knowing how quickly the bottom fell out of their world that inspired Valerie and Bill to help others – and since then hundreds of families have been supported through the uncertainty of dealing with the diseases as well as the grinding hospital treatments by CCLASP’s parent meetings, telephone helpline, transport to clinics and hospital appointments, and even holidays away.
“Robert survived – we were one of the lucky ones – but we realised we wanted to help others going through the same thing,” says 58-year-old Valerie, managing director of CCLASP.
“We’ve walked in their shoes and we don’t want people to feel afraid on their own. We had the finest doctors helping Robert but we felt that we needed to speak to other families going through the same situation. It’s someone who knows how you are really feeling. That’s what’s driven everything for the last 20 years.
“Demand for what we do has never slowed down – in fact, it’s increased – so when the announcement was made that a new Sick Kids would be built next to the Royal Infirmary at Little France, we knew it was an opportunity to finally build our own centre for families whose children will be treated in the new hospital.
“We looked for land for around two years and then luckily we found some very close by and the sale is all going through. We’re hoping to have it all signed and sealed very soon. And we had an architect design the building.”
Then came a windfall. “We got an unexpected donation which will mean we have all the money we need to build it. It’s taken our breath away.”
The donation was for £1 million – the total build cost – from the Howat Foundation, a Perthshire-based charitable trust run by Malcolm Howat Jnr, whose mum successfully battled leukaemia ten years ago.
“We were having our annual fundraiser and Malcolm Jnr and his father, Malcolm, were there,” says Val. “Of course we were telling everyone of our plans for the centre and how much fundraising would be needed and at the end of the evening they just said to us ‘we’ll give you the money’. We couldn’t believe what we were hearing. It is incredibly generous and really we still can’t quite believe it.”
Willie McEwan, trustee of CCLASP, introduced the Howats to the charity years ago.
“A friend of mine, Martin Ferguson, Alex Ferguson’s brother, was a coach at Hibs and I invited him to a fundraising ball and he brought Malcolm Howat with him and he was very interested in what we were doing.
“We sent him details about CCLASP and he gifted us funding to buy a holiday cottage in Perthshire for our families. Then at this year’s ball he came over just after midnight, just four hours after we’d launched our appeal for the centre, and he said ‘go and do it, we will pay for it and help meet running costs for first two or three years’.
“It was amazing. It’s overwhelming how charitable people can be. It’s phenomenal. Malcolm Howat Jnr is getting involved in the design and the build – we want them to be involved so they can see where the money is going. It’s going to be called the Howat Foundation CCLASP Centre with their logo on it – it’s only fitting.
“We’d be lucky to raise that kind of money in five years. And this is going to help thousands of families in the future.”
Mr Howat – whose family ran the oil company Howco Group – has said: “I feel very, very lucky to be able to do this. Everything happens for a reason and a reason makes it easier. My mother had cancer and it’s an aggressive illness, it’s so difficult coping with it when it happens to a family member. I can’t even imagine what it must be like if it was your child.”
CCLASP is currently based in Leith, from where it organises transport services, days out and short breaks away in caravans to give families a break, but it will move to Upper Craigour – hopefully in 2017.
The design for the building is triangular and it will offer a range of different rooms and facilities for children and teenagers, allowing families to share quality time together as well as a place to play and relax. There will be drop-in rooms for parents who need support from CCLASP staff and other families going through the same thing.
There will also be a rooftop garden – a tranquil place to escape the pressures of the hospital and illness.
“We still have to fundraise to fit it out but it’s such a wonderful relief that the costs of the building are already met,” says Valerie. “We’ll be given the money in tranches as the work is done. However, we still need to continue to fundraise just for our annual costs, too – that’s around £500,000 a year, so it’s hard work. I was at five fundraising events just last weekend but you have to do it.”
The centre will include a one-bed self-contained apartment for emergency use by parents, but will mostly be used as a drop-in hub. It will include a cafe – not open to the public – where parents will be able to have something to eat and chat to each other.
“They can even make a bowl of soup or the favourite food for their wee one who might not want to eat what’s offered in hospital because of the chemo,” she says.
“There will be a teenagers’ room with an Xbox, PlayStation and so on and a party room which can be used for birthdays because that can be difficult for children with cancer.
“Also, importantly, we’ll have parking which means parents won’t have to pay at the Royal.”
She adds: “We think it will make a big difference because we will be able to offer more to parents, the sick children and their siblings who also need and are sometimes slightly forgotten as all the focus is, understandably, on the ill child.
“It will be a place we hope where people will feel looked after.”