A local mum who launched a charity earlier this year has just returned from a week in Utah where she took a group of young adults to a special camp for children with neurofibromatosis.
Around 25,000 people in the UK live with the incurable condition Neurofibromatosis Type 1 which causes tumours to grow along nerves of the skin and inside the body, often leaving people in constant pain.
Many of these are children and young people. Their young lives revolve around hospital appointments, consultants, scans and operations.
Vanessa Martin, from Winchelsea Beach, whose 19 year old daughter Nicole has the condition, launched the charity Childhood Tumour Trust to support children and young people.
She says that although it is incurable with regular check-ups and appropriate care, many people affected with NF1 can lead fulfilling lives.
Vanessa organised and raised funds for a group of youngsters to spend a week at Camp Kostopulos in Salt Lake City, Utah which provides activities such as high rope walking and horse-riding. Nicole Martin has been travelling from the U.K. to Camp Kostopulos for five years as it helps to put her ailments behind her.
She told an American news team: “It’s a way for me to forget about my problems. Forget about NF, but to also have people who understand it and know what you are going through and don’t ask questions why you can’t do things or why you do things differently.
“My mum saw the big change that happened in me and meeting other people affecting me and she really wanted that to happen to people in the U.K. who don’t really get the opportunities like that back home.
Vanessa, helped raise 15,000 dollars to pay for nine U.K. campers to come to this year’s NF week. So, when Nicole returned to Camp K this year, she brought eight fellow U.K. residents .
One of those, 16 year old Courtenay Phillips, said; “. “I feel more comfortable here because everyone understands you and no one judges you.”
For more information on the charity, visit www.childhoodtumourtrust.org.uk.
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