Sam’s list survives in the form of a mind boggling array of equipment, medical and otherwise, which accompanied each and every outing Sam Ronson ever made in his short but surprisingly sunny life.
Cumbersome wheelchair. Suction pumps. Tracheotomy kit. Ventilator. Humidifier. Oxygen. Condensers. Nebuliser. Breathing monitor. Incontinence pads. Three changes of clothes a day. More. Lots more.
All the trappings of a short life well lived in spite of enormous difficulties.
It was Sam’s list which helped inspire the vision of a holiday-cum-respite centre for families of children with life threatening or life limiting conditions right here in the Fylde.
Dr David Cooper, the former Blackpool GP who became medical director and chief executive of the hospice he founded, Trinity Hospice in the Fylde, retired in order to pursue that dream.
Sam came under his care at Trinity’s Brian House children’s hospice. The little lad, who died at nine in 2007, never failed to impress the big hearted medic with his zest for life and sense of the ridiculous.
Sam’s mum Carla, of Pilling, recalls how even at Sam’s funeral there was laughter as well as tears. Particularly when the A of helium balloons spelling out Sam’s name exploded at a crucial moment during the eulogy - and left mourners crying with laughter.
“Sam was there in spirit,” she adds.
Her brave little boy lived life to the full, testing the boundaries of a debilitating and life limiting condition each and every day of his life.
He had congenital cytomegalovirus, causing him severe physical, learning and health problems. He still threw himself into activities with other children, including the Boys’ Brigade, winning a national award from the association.
He took part in various charity challenges, even producing art to auction for the National Association of Children’s Hospices.
Sam’s work, My Magical World, was heavily influenced by Sam’s hero, Harry Potter - and won praise from actor Daniel Radcliffe.
Carla recalls: “He was Harry Potter mad.”
He also rode - his family moving to a new home, investing in stables, to ensure the little lad’s passion for ponies (since passed to his sister Annabel, eight) was not reined in by red tape elsewhere.
Sam had plenty of days out, each necessitating the medical equivalent of a military exercise in terms of advance planning by his parents. But they had only two family holidays back then because of the sheer scale of the logistics involved.
Every scrap of available luggage room in two trips abroad was taken up with Sam’s stuff - the contents of that list.
It meant, as Carla explains, that the rest of the family bought what they needed once they got there. And left much of it behind.
The chance to travel to a specialist holiday centre, bespoke for the needs of children such as Sam, in this country, was out of reach then.
Sam’s legacy lives on in registered charity Sam’s Place - a £2m plan to build a holiday and respite centre on a 10-12 acre site here in the Fylde.
Unlike Brian House, the Trinity-linked children’s hospice which helped Sam time and again, including right at the very end of his life, it will not provide medical facilities.
But if laughter is the best medicine Sam’s Place will be just the tonic the doctor ordered for families looking after children with serious life threatening or life limiting conditions.
Former hospice chief David is behind the new charity set up to establish a holiday centre in memory of the child whose courage and story inspired the development.
“Sam was a remarkable child and it was a privilege to know him,” David explains. “He was a little boy in need of this facility but sadly he died in 2007. However, Sam’s story has been an inspiration. We owe it to him and all who have supported the project to see it through.”
Trinity is testimony to David’s determination to see things through. He got that up and running from a standing start. He also had to seek out another site when the original location was snapped up by another health facility.
“I really don’t think there could be a better place for Trinity than where it is today.”
It was his vision that started it in 1979 and the allied children’s hospice Brian House in 1993 - both of which continue to develop apace.
He now chairs The Children’s Hospice Play and Holiday Centre which is raising funds to build the centre under the working title of - Sam’s Place.
Fellow trustees include Sam’s mother Carla, local carers’ champion Michelle Smith, who knows just how crucial holidays are to families, and MRI Scanner and Blackpool Macmillan Windmill Cancer Unit appeals veteran Elaine Fossett, who raised millions for both causes.
There are also health (and hospice) professionals involved and others bring specialist expertise to the campaign. More fund-raising and other volunteers are needed, including administrative staff, along with donations - and suggestions of a site for Sam’s Place.
One anonymous benefactor has already donated £250k.
The project has not been without setbacks. It was initially hoped to establish Sam’s Place at Ashley Hall in Thornton where the charity has its administrative base. Legal and planning issues put paid to that.
David explains: “Restrictive planning laws in a green belt area and legal complications surrounding the site mean that we have to look elsewhere.”
Rather than lose momentum the appeal is rolling on. It has funds and supporters. And the establishment of a similar facility in the south, with plans for another, highlights the need for Sam’s Place in the north.
Carla agrees. “Sam loved Ashley Hall when he saw it but he would want us to see this through wherever it goes. The need is there. And there couldn’t be a better location than the Fylde because it’s so central to places families love. It’s not going to be a children’s hospice but a specialist holiday centre. Sam loved fun. Days out are great, once you get there, but it’s emotionally and physically exhausting and much better to get a longer break. But you have to cater for every contingency.”
David adds: “The need for a centre such as our’s was brought into sharp focus by Sam’s mum when she produced the list of things she needed to pack for Sam if they were going to take him on holiday - over and above the normal family packaging.”
Sam’s Place will provide several purpose built lodges where families can bring their child - and their other children - knowing they don’t have to provide and bring bulky liquid feeds and heavy equipment.
“There will be no medical facilities as such - Brian House already meets that need - but we will facilitate the visits,” adds David.
Families will be able to come for a day or a week or two with the frequency determined on the family’s needs.
Elaine says there’s only one other facility of this kind in the country- Bluebells in Hampshire was established by Sebastian’s Action Trust in honour of Sebastian Gates who died at seven on Christmas Eve 2003 from a rare form of childhood cancer.
“Our visit there galvanised us,” Elaine admits. “Why should the south have a facility, and not the north?”
David adds: “The visit reshaped our thinking and led to a redesign of our plans. Bluebells is always full and a second unit is planned. We feel justified in proceeding without further delay.”
Sam’s Place will also be open to local children who do not access existing children’s hospice services, adds David.
“The idea is to complement existing services such as Brian House or Donna’s Dream House. We don’t want to duplicate anything that either facility offers.
“Brian House does not cater for whole family holiday respite and Donna’s Dream House does not cater for such complex needs. Sam’s Place will be a third service targeting a clientele for whom there are no other provisions in the north.”
Trustee Michelle, chief officer of Blackpool Carers’ Centre, concludes: “Families want to holiday together, rather than leave one child in specialist care while the rest get a break. That’s appropriate at times but not when families want to holiday as a family. Sam’s Place answers that need.”
* Anyone wishing to help or learn more can contact the team on (01253) 890024, email email@example.com or visit www.chphc.org.uk or www.sams-place.org.uk.