UNTIL a few weeks ago, Lewis Perham could not bear to feel water on his legs and feet.
But now the nine-year-old from Cwmbran, who has Complex Regional Pain Syndrome (CRPS), has completed a sponsored swim in aid of the hospital that is treating him.
Lewis gritted his teeth to complete a one kilometre swim at Llantarnam leisure centre, an effort that has so far raised more than £1,600 for the Royal National Hospital for Rheumatic Diseases, in Bath.
His health problems began last May with a slight knock on the ankles while playing rugby, which triggered a gradual physical reaction leaving his lower limbs so sensitive that more than a year on, he still cannot bear the weight of his bedclothes.
He has been wheelchair-bound since last August, and although he can now bear to touch his toes and has resumed swimming, he remains prone to excruciating pain in his legs, ankles and feet, caused by knocks, pressure or even wind and rain. Temperature changes are also a problem.
CRPS brings neuropathic pain, caused by nerve problems. Why or how it starts remains a mystery, though a simple injury like a sprained ankle can trigger it, even without nerve damage.
Incidence estimates vary from one-in-4,000 to one-in-18,000, but it is rare in children. Lewis is believed to be Wales' youngest CRPS patient.
"We were lucky, we got a diagnosis pretty quickly. Some people wait years and the damage is harder to treat," said Lewis's mum Claire.
"Treatment was arranged at Bath, a specialist centre for CRPS, and he's had two week-long stays.
"A lot of it is touch therapy, getting limbs moving, and there's a lot of psychological input, to help cope with the pain."
Further sessions have been postponed by administration delays with specialist NHS funding, but Mrs Perham said they have made a big difference.
"This will take a long time to treat, and he might not get back to how he was," she said.
"He's been very down, but he's much more positive at the moment, because he can see the progress.
"He can bear to touch his toes, there's more movement, and he's thinking about things like swimming again."
SWIMMING can play a vital part in improving Lewis's symptoms, and Mrs Perham said staff at Llantarnam leisure centre pool have been "fantastic."
"They've really gone the extra mile. He has his own wide lane, his own instructor, and his group do the hydrotherapy with him," she said.
The sponsored swim idea came from Lewis spotting a banner at the Bath hospital in May.
"I wanted to give them something in return for helping me," said Lewis, who has a younger brother, Leo.
"I wanted to raise £1 a metre, but it's now more than £1,600 with more to collect."
Family, friends and staff cheered Lewis on and despite excruciating pain toward the end, he completed his swim.
"He was crying by the end, but he was determined," said Mrs Perham.
"After his story was in the Argus last December, we were contacted by a family in Caldicot whose teenage son has CRPS. He's been very supportive. He was up and down the poolside, cheering Lewis on."
Lewis has started back part-time at Pontnewydd primary school, and goes to cubs. But Mrs Perham and his dad Iestyn know the treatment road is long.
"CRPS can ease and flare up again, but Lewis now realises he can be back on his feet one day. That's what were aiming for," said Mrs Perham.