Relatives of a little boy who died from rare childhood Alzheimer’s are taking part in a ‘Colour Dash’ this Sunday in aid of Keech Hospice Care.
Five-year-old Roman James, of Cheddington, sadly lost his fight on April 11 after a brave battle with Niemann-Pick Type C Disease.
Roman was diagnosed with the condition – which affects one in 150,000 children – at the age of two, having enjoyed a completely normal babyhood.
For the rest of his life, he and his parents Scarlet and Ben were supported by Keech Hospice Care and the family are keen to give something back.
On July 16, more than 30 people will participate in the ‘Colour Dash’ – where sprinters are treated to a few splashes of paint – and they are hoping to raise as much money as possible.
Grandmother, Beverley James, said: “Keech’s service from Roman’s diagnosis through to the end of his life was absolutely phenomenal. We’re just looking to give back as much as we can.
“It’s not just children who are cared for, it’s also an adult hospice and it provides brilliant respite support.
“You never know when people are going to need their services and they rely on 70per cent of their funding through donations.”
Roman’s mum, Scarlet, said: “Not only did Keech provide invaluable respite care for Roman in order for myself and Ben to have a break from the gruelling day-to-day care Roman so desperately needed but they also provided a beautiful, welcoming and supportive place for Roman to stay after he died.
“It gave myself and Ben the time to grieve with Roman right next to us in the first few days after his passing. This time was very very difficult for us but I will never forget those days we spent holding our little boy’s hand and kissing his peaceful face.”
She added: “Those days cost Keech nearly £4,000.”
To date, the campaign has raised over £2,500 of its £5,000 target and the family are eager for sponsorship to help them reach their goal.
Keech Hospice care is delivered to patients, children and their families in a variety of settings including the family home, school or in hospital. Its care has been rated ‘outstanding’ by the Care Quality Commission.
To donate to the cause or to find out more information, visit www.justgiving.com/fundraising/Derek-James1.