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The Story of Toby Bear


Susan Spencer

Founder of NEC UK

Susan Spencer the founder of NEC UK recently retired from her position within the charity, however leaves behind her legacy of NEC UK to the remaining Trustees.

Susan is a bereaved parent whose baby boy Tobias sadly died post surgery as a result of NEC. Toby Bear was born in 2003 to serve as a special friend in accompanying baby Tobias on his final journey. It was decided after this special role Toby bear would go on to be a friend to another child, a baby who was recovering from Necrotising enterocolitis who this teddy could be a friend to and share a world of adventures with. Toby bear was donated anonymously.

In 2012 when NEC UK started our journey as an informal group on social media, a group logo was required and Toby Bear was replicated with the logo.

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Toby bear headed the profile of the NEC UK public awareness page too and in 2013 Toby Bear did a virtual tour of the UK to raise awareness of NEC and the profile of the group. The virtual tour saw Toby Bear travel one mile for every new page like and weekly page supporters would vote the direction the bear would travel in.

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2013 also saw Toby Bear participate in a buggy push for Bliss, his guardian won a raffle of another teddy bear who too was donated to a baby in hospital.
Between 2013 - 2016 Toby Bear was responsible for lots of little acts of kindness many anonymously but some of these acts we can tell you about are tokens of support causes related to neonatal care, gifting nominated professionals and support staff in appreciation to their hard work and donating replenishments for parents in hospital. 

Toby bear in the physical sense was replicated in a smaller version in 2016 as a team of parents and an adult NEC survivor who came together through the online NEC UK peer group to discuss forming NEC UK as a charity. Toby Bear became the first to sport a mini t-shirt with NEC UK logo! A short time later with the kind and encouraging support of Leeds General Infirmary Toby Bear was equipped with medical accessories which help to demonstrate some of the support babies who experience NEC require.

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Whilst our team made early preparations to becoming a charity Toby Bear continued reaching out to make a difference. Special Teddy bear friends were donated to help a child starting school and assist in helping other children to identify with their own or a siblings NEC journey. Brand new tiny premature baby clothes were donated on behalf of Toby Bear after an appeal for support by a hospital was seen by his guardian. Toby Bear also spent a little time with Leeds United football club and got to sit on the club’s tour coach with special thanks to Stix Lockwood for helping to raise awareness.

Since Susan's in departcher Toby Bear understandably remains with her and her family.

A new Toby Bear Mascot joins the team in his place along with our new logo in line with the Global Colour scheme Blue and Green for NEC Awareness. Toby's replacement Bear will continue to accompany us to meetings, training days, conferences, in raising awareness and more! simply because tiny bowels matter.

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