Matilda Vere was 28 hours old when she suffered the first of four heart attacks which would claim her young life.
She died from a very rare condition, pneumo pericardium complicating respiratory distress syndrome.
Matilda’s tiny body was flown back from Hong Kong where she was born for her funeral in St Wilfrid’s Church, Harrogate.
Now her family are determined to create a lasting memory to Matilda and raise funds for the children’s charity Sparks.
Her aunt, Susie Little is tackling the infamous Scumrun – a four-day challenge which will see her travel 3,000 miles across Europe in a vehicle costing less than £500.
Tackling the banger rally on May 3 will be no easy feat for Susie, especially as she will spend the duration dressed as Thunderbirds’ Lady Penelope.
She will be accompanied by her very own Parker (friend Sean O’Malley) and travelling in a custom-modified version of FAB 1 – a now bright pink Mercedes E-class estate.
Each day’s destination is only revealed each morning and there are checkpoints along the way that have to be worked out, reached and photographic evidence provided.
“Sparks champions vital research which helps to reduce the health risks of premature birth, increase the life expectancies of newborn babies, and further the treatment of serious and life-limiting illnesses in children. They’ve ploughed £20m into this crucial work so far, but there is more to be done.”
There are only 42 recorded cases globally of pneumo pericardium complicating respiratory distress syndrome – almost all of them fatal.
Determined to create a lasting memory of Matilda, self-confessed petrolhead Susie has entered the rally under the poignant team name Miles for Matilda.
“Even now, it is impossible to describe the shock, devastation and overwhelming sense of loss,” explains Susie.
“As a family, we are determined that something positive should come from our dreadful loss and I have wanted to do something to raise funds for this wonderful charity, in memory of Matilda, for some time; it was just a question of what.
“Those who know me well will know straight away that marathons and climbing mountains are not my style, but I wanted to do something fairly extreme with the aim of raising a considerable sum. Then I discovered that the Scumrun Rally has SPARKS as it’s designated charity for 2012.”
Susie has already raised £4,000 towards her target.
“We’ve been genuinely overwhelmed by the generosity of friends, family, colleagues and clients. It’s what we’re affectionately calling ‘the Matilda effect’.
“Without this support Sean and I wouldn’t even be able to take part in the event, never mind work towards the significant fundraising target that we’ve set ourselves. The stark reality of the challenge is really hitting home – we literally don’t know where the route will take us from one day to the next – but the desire to do all we can to help this fantastic charity just keeps on getting stronger.”
This year’s Scumrun challenge starts on May 3 at Thruxton Circuit in Hampshire. It will be officially launched by former racing driver and Fifth Gear presenter Tiff Needell.
The Scumrun is one of a number of fund-raising events in memory of Matilda.
Family friend Will Gloves is running the London Marathon next month for Miles for Matilda and in October her mother Alex and a group of friends are cycling 500km from Saigon to Angkor Wat.
To support Susie and help to raise money for Sparks in Matilda’s memory, please make a donation however small via www.justgiving.com/MilesforMatilda. To find out more about further Miles for Matilda visit www.milesformatilda.co.uk.