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image copyrightToni Mathieson
image caption I think unless you re affected, you really don t understand or recognise the fact that rare diseases exist, Toni Mathieson said
A mum who lost all three children to a disease which has affected only 110 people in the UK has welcomed plans to light up monuments on Rare Disease Day.
Toni and Stewart Mathieson discovered their five-week-old daughter Lucy had Niemann-Pick Type C (NP-C) in 2003.
Given six months to live, she defied the odds and lived until she was four, but the couple also lost babies Hannah and Samuel to the same disease.
HRH The Countess of Wessex GCVO has spoken about her pride for the âincredibly specialâ Foundation of Light in a video call to mark the start of the Foundation of Lightâs 20th birthday celebrations.
Hosted by Sky Sports presenter and Sunderland AFC board member Dave Jones, The Countess was joined by the Foundationâs Chair of Trustees, Sir Bob Murray CBE, Chief Executive Lesley Spuhler OBE DL and Sunderland AFC Ladies Captain Keira Ramshaw.
The event marks the start of a year of celebrations by Sunderland AFCâs official charity, which uses the power of football to support tens of thousands of people across the North East to live happier and healthier lives.