Shropshire Star

Children all smiles at inspirational Shropshire camp

Inspirational children were full of smiles as they were treated to an adventure holiday in the Shropshire countryside.

Published
Ashleigh Russell 16, from London, on a zip wire

Around 30 children from across the UK and overseas who are all living with a genetic disorder came together in Shropshire for a Childhood Tumour Trust camp

The children all suffer from neurofibromatosis, or NF1, a genetic neurological disorder which causes tumours to grow on nerves and affect the brain, spinal cord, nerves and skin.

The trust was set up by Vanessa Martin, whose daughter Nicole had the disorder, after she had been out to camps in the US, where children suffering with the condition came together to make friends, build confidence, and have fun.

With no camps in the UK, Vanessa, along with the help of friend Jo Barry, set up the trust, and so far five camps have been held across the country.

For a second time a camp was held at the PGL Boreatton Park Activity Centre, near Baschurch, from Monday to Thursday last week, with children between 12 and 17 taking part in activities such as kayaking, a disco, archery, wacky races, a disco and much more.

Vanessa, who is from the south coast, near Hastings, praised the team of PGL staff for their work, and the inspirational children who enjoyed a week away from the reality of their disorder.

She said: "It is the second time we have come here, the facilities are fantastic, and the staff are just amazing with the children.

The Childhood Tumour Trust camp at PGL Boreatton Park in Baschurch.

"These are children who have had the disorder, maybe have been bullied, had no friends, but when they come here every is in the same boat, and they come out of their shells and grow, and it is satisfying to see how much they change during the week."

TF1 can cause bone deformities, sight problems and chronic pain. It affects everyone differently, however studies have shown that 95 per cent of suffers will have six or more brown marks on their skin.

Vanessa insisted conditions are going undiagnosed, because medical professionals believe they are just birth marks.

The trust is continuing to campaign to improve provision for sufferers as well as funding research into the disorder.

A total of 31 children took part in activities, and they were assisted by a group of leaders, who are sufferers who previously attended the camp and have now returned to help others.

One leader is Vanessa's daughter Nicole, now 21, who was diagnosed at an early age, and despite being told she wouldn't be able to overcome hurdles in life, she is now studying engineering at Glyndwr University in Wrexham.

She said: "I've struggled to walk and do day to day things, and sometimes I'm in a lot of pain.

"I went to my first camp at 14 in the US, and seeing these children here is fantastic, they are so happy and it is a place where they are not isolated.

"When they come on this camp they realise they are not the only ones who are suffering."

The Childhood Tumour Trust camp at PGL Boreatton Park in Baschurch

A youngster coming on his first camp was 15-year-old George from Manchester, who said: "I've enjoyed all the activities, and I jumped off a high rope which I didn't think I was going to do. It is nice to meet new people, and I hope to come back again to the next one."

Julia Sarnoff travelled all the way from California to be at the camp as a leader, with friends she had previously met at camps in the US.

After being diagnosed aged six months, Julia has undergone three spine diffusions, and had two tumours removed,

She added: "I've been in chronic pain, and suffer sometimes from depression and anxiety, but when you come to a camp like this, you're with people who understand what you are going through, and it is really enjoyable."

It costs around £8,000 put to put on a camp, with families making a contribution of around £40.

On Thursday, children enjoyed an end of camp party, supported with a grant from the Rays of Sunshine charity, and popstar Olly Murs, who supports the charity, sent the children a video message wishing them a good time.

Local companies Trixpix, Rainbow Faces, Console Heaven Van and Balloon Shrewsbury have all donated items and given discounted rates to an end of camp party.

Vanessa said: "They didn't need to be so generous, but they have and we are so grateful to them."

All the children returned home following the camp on Thursday, however one staff member at PGL is hoping the inspiration children return to Shropshire again next year.

Lucy McCulloch added: "They are just amazing, they come here shy and won't talk a lot and they just grow in confidence throughout the week. They're just inspirational and I really hope they come back next year."