Project aims to help support children close to someone with motor neurone disease

A new pilot project is launching today to help children who are close to someone with motor neurone disease (MND) create, capture and store memories of their loved ones.
The boxes are filled with a range of activities aimed at prompting memories.The boxes are filled with a range of activities aimed at prompting memories.
The boxes are filled with a range of activities aimed at prompting memories.

The Nick Smith Foundation, based in Calderdale and founded after the death of 38-year old Nick from MND, has partnered with the MND Association to develop ‘Treasure Boxes’, for children aged four to ten, and ‘Memory Boxes’, for those aged over ten.

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Filled with a range of activities aimed at prompting memories to be made and captured for the future, children and young people can now create a life-long resource to treasure.

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Experience shows that families often do not know where to turn when someone is diagnosed with MND and, by the time they think about what memories they want to store, it can be too late with half of those diagnosed with MND dying within two years.

Nick, from Halifax, died 101 days after being diagnosed in December 2017.

Stephen Naylor, chair of The Nick Smith Foundation and Nick’s brother-in-law, said: “When Nick was diagnosed, knowing what to do to ensure his young children, Hadyn and Georgia, remembered him was difficult. That is why this project is so important to us. We want other families to have access to something that we wish Nick and the family together could have shared and created before he died.

“We are proud to be working with the MND Association on this important project and have worked closely with their team to share our experiences, test the items which have been added to the boxes and make sure they can be used to help families when they are trying to cope with the worst possible news.”

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Laura Willix, from the MND Association, said: “The trauma felt by children, young people and the wider family after an MND diagnosis can be devastating. Our treasure and memory boxes are interactive, tactile and aim to support children and young people gather special memories, or bits of treasured information to help them emotionally cope with some of the challenges they may face.

“Our work with children and young people has informed the development of the boxes. They told us how hearing family anecdotes or sharing stories can help them connect to their family member with MND while they are still alive. And, after death, something as simple as seeing their loved one’s handwriting can help retain that connection.

“For the person with MND, the boxes support them to talk with their children about their life story and guide them through some simple steps to sharing.

“Our aim is that the Boxes will help children and young people feel more able to cope and allow for discussion between the family members about what lies ahead.”

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Over the next year, the boxes will be trialled with children and young people close to someone newly diagnosed with MND in Calderdale and Kirklees, as well as in Milton Keynes and Salford.

Feedback and evaluation from this pilot will influence further development of the treasure and memory boxes with the aim of the scheme being made available more widely in the future.

Anyone in Calderdale and Kirklees who thinks a box may be useful for them can express an interest in receiving one at www.nicksmithfoundation.org.uk/memorybox.