A mother has set up a new national charity to offer support to those suffering from a rare, life-limiting condition.
Vanessa Martin, of Winchelsea Beach, launched the Childhood Tumour Trust with the backing of X-Files actress, Gillian Anderson.
Her 19-year-old daughter, Nicole, has Neurofibromatosis Type 1 (NF1).
The condition is characterised by tumours growing on the nerves, curvature of the spine, learning difficulties, facial disfigurements, blindness and epilepsy, as well as other symptoms.
Vanessa launched the charity on Sunday (May 1) after registering it in February.
She said her daughter attended a camp in the USA for children with NF1 and gained so much confidence, which inspired Vanessa launch the Childhood Tumour Trust.
Vanessa has run two similar camps in the UK.
She said: “NF1 causes all sorts of serious problems.
“Children have cafe au lait marks and if they have six or more there’s a 95 per cent chance they have NF1.
“Nicole was diagnosed when she was three but some people are not diagnosed until adulthood.
“I set the charity up to raise more awareness and to push for better diagnosis.”
In 2014, Nicole raised almost £2,500 from doing a sky dive only two months after surgery to remove cancerous tumours.
She shared the money between Charity for Kids, Children’s Tumour Foundation and a charity for scleroderma, an uncommon disease resulting in hard, thickened areas of skin.
Vanessa, a cardiographer at the Conquest Hospital in St Leonards, has campaigned in the House of Lords and with NHS England.
The charity is campaigning to have cafe au lait marks in the Child Health Record to avoid late or even non-diagnosis of NF1.
Visit www.childhoodtumourtrust.org.uk for more information.
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