Pilot project helps children create and save special memories

Memory and treasure boxes


Children and young people who are close to someone with motor neurone disease (MND) are being given the chance to create, capture and store memories of their loved one thanks to a pilot project launching this week.

The Motor Neurone Disease Association has partnered with the Nick Smith Foundation to develop Treasure Boxes, for children aged four to ten, and Memory Boxes, for those aged over ten.

The boxes are being trialled in Milton Keynes, Manchester, Calderdale and Huddersfield, and offered to children and young people close to someone newly diagnosed with MND. 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.

They join a catalogue of specialist resources for children and young people offered by the Association, which include the ‘MND Buddies’ web hub, workbooks and information guides.

Laura Willix, Children and Young People’s Service Development Manager at 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.”

The trial is part of a joint project, funded by the Nick Smith Foundation. The charity was formed in 2018 after the death of father-of-two Nick Smith from Calderdale, West Yorkshire. The 38-year old died from MND 101 days after being diagnosed.

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.”

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

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262