How selective dorsal rhizotomy (SDR) allowed a cerebral palsy sufferer the chance to walk

We had no idea anything was wrong with Kyle at first, says Samantha, who works for the local air ambulance service as a dispatcher (she is on a years unpaid leave). Kyle was premature but seemed healthy.

Yet, as he grew, Kyles parents noticed he was missing the milestones that Zoe had hit with ease. At eight months Kyle couldnt sit upright, let alone stand, says Simon. He was constantly hunched over in a sort of banana curve.

At 16 months, while attending a routine local hospital clinic after developing asthma, a registrar mentioned in passing to Samantha that her son had cerebral palsy.

I was shocked, she says. When she called Simon, who was himself in hospital recovering from a hip operation, he fainted into the arms of a nurse. A paediatrician later apologised for the careless way they were informed, but the Weavers still felt unsupported. We were told to look it up on the internet, and talk to parent support groups.

The hospital did arrange for an MRI scan of Kyles brain, which confirmed the young boy had a type of CP called diplegia. Cerebral palsy occurs when the brain is starved of oxygen, usually around birth, and has more than 20 variants. It can affect all four limbs (quadriplegia), one side of the body (hemiplegia), motor control and mental development.

In Kyles case, as in others, doctors have been unable to determine when or how the damage occurred. But his legs, and to a lesser extent his hands, have been affected; messages from the brain that pass down the neural pathways of the spinal cord to instruct his leg muscles to move have not been getting through. Instead, the nerves tell his legs to become spastic and stiff to support the bodys weight.

Samantha shows me a film on her iPhone of Kyle a year ago. Supported from behind by a K-frame (a kind of walking frame in reverse, which prevents him falling backwards), Kyle half-drags his frozen legs along, pain dogging each step. It is heartbreaking.

Conventional CP therapy included Botox injections into his legs to trick temporarily the nerves into easing up the stiffness. A muscle relaxant drug called baclofen is used, too, but this left Kyle doped up and floppy, says Simon. The couple were warned he might never walk unaided. It was a distressing time. Then we saw a news item about an operation, called a selective dorsal rhizotomy (SDR), in the US that was helping children with CP to walk.

Their own doctors were not enthusiastic. The surgery cuts open the spinal cord, so that a surgeon can test which nerves are sending messages to the legs to be stiff. These are then cut. Approximately two vertebrae will be removed for good to enable access to the nerves.

In the UK, it is usually performed between the ages of seven and eight, as younger children are considered too immature, not just for the surgery, but to take on the months of demanding physiotherapy that follow. Moreover, most NHS trusts will not fund it. The family of a two-year-old boy in Manchester last week announced they have just raised the 24,000 to get SDR surgery performed in Leeds. A spokesman for NHS England said: Funding is only granted in exceptional cases.

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How selective dorsal rhizotomy (SDR) allowed a cerebral palsy sufferer the chance to walk