A RESILIENT youngster with a rare skin condition is inspiring a cyclist to complete a fundraising 400-mile bike ride across France.
Andy Simpson, 42, of Main Road, Little Casterton, will be cycling from Léguillac-de-l’Auche, in the south of France, to King’s Cross Station, in London, this weekend.
Web designer Andy wants to raise £2,500 for support group DeBRA, a parent support and research charity, after hearing the story of two-year-old Phoebe Crowson, who lives with parents Nick Crowson and Zoe Doyle in Pilsgate, near Stamford.
Phoebe is among an estimated 5,000 sufferers in the UK of the genetic condition, epidermolysis bullosa, known as EB. This condition makes her skin fragile and also affects her internal linings.
Phoebe enjoys climbing and playing but unlike other youngsters her age, a simple fall can painfully rip three layers of skin from her body.
The condition also creates blisters which her parents can lance up to 10 times a day and the youngster has to wear protective knee pads.
But Phoebe refuses to let the condition hold her back and remains a lively, happy girl.
Andy says Phoebe will be an inspiration during difficult times in the ride, which he will be undertaking with friends.
They will be cycling from Andrew’s home in Léguillac-de-l’Auche to make their way up to London on Monday, September 5.
Andy, who has cycling 100 miles a week in training, said: “It is very emotional story and I think a lot of people with children will be able to relate.
“In difficult times, I will think about Phoebe and get on with it.”
Phoebe, who suffers from a mild form of recessive dystrophic, was diagnosed with the condition after a midwife became concerned after a standard skin heel prick test shortly after her birth. Further tests and a visit to Great Ormond Street Hospital diagnosed the condition.
The youngster eats pureed food as her oesophagus was blistered and has to wear a protective body suit in warm weather, which can affect her condition.
Her parents Nick and Zoe have to be careful when changing the youngster’s nappy as her skin can tear easily and they have installed soft play equipment in the garden.
Proud mum Zoe said: “I think Pheobe’s pain threshold surpasses any one I know.
“If she falls on her knees and three skin layers come off, she will just get up.”
If anyone would like to support the bike ride go to www.justgiving.com/Leguillac2London or bit.ly/stamfordbutterfly