SDR (Selective Dorsal Rhizotomy) is surgery that can give children affected by certain types of Cerebral Palsy a whole new life. For many children like Imogen, SDR gives the chance to walk independently and to lead a relatively normal life. Imogen has never taken an independent step, and suffers from severe stiffness and reflexes in her legs that make it very hard for her to control her limbs. When she tries to walk her legs cross over and her body closes in on itself, so, while she can sit independently and stand with some support, taking independent steps has always been impossible for her. The surgery will reduce the stiffness and improve her coordination. It cannot heal the damage to her brain, nor will it be sufficient on its own to help her reach her full potential – the surgery will be followed immediately by intensive physiotherapy, and she will need to work very hard to develop strength and control in her muscles.
A type of SDR has been offered by the NHS in the UK for some time. It involves cutting fewer nerve fibres, a larger incision, and more lamina (bones in the spine) are operated on to perform it. These factors can result in a smaller improvement in function than the version performed by Dr. Park in St. Louis, Missouri. The NHS version of SDR also leads to more problems with post-operative pain. Dr Park pioneered SDR over 20 years ago and therefore has the most experience. He performs this surgery 1 - 3 times a week which makes him the most experienced person for the job. He is selective about who will benefit from this surgery and therefore has a 100% success rate.
A hospital in Bristol, UK, has recently started carrying out the same procedure as Dr Park, but the demand for the surgery is high, and hence eligibility criteria are tighter and funding is not approved in Wales at the moment. Since Imogen is already six years old, and is likely to need corrective orthopaedic surgery on her legs in the fairly near future, it is important that she has the SDR surgery as soon as possible. One of the important reasons for proceeding with SDR is that it may prevent the need for regular orthopaedic surgery as Imogen grows.
The operation is going to cost tens of thousands of pounds, including the flights and accommodation in the USA for the weeks of follow-up physiotherapy. However, after receiving all the information on Imogen, Dr Park wrote to us and said that he “strongly recommends” that she has the surgery. In his letter he described the expected benefits – and they are better than we had hoped for. After this operation, Imogen has a good chance of walking using a walking frame and there is some chance that she will be able to walk with crutches. This would be a dream come true for her!
And so we have joined the hundreds of parents who are trying to get their children to America to have SDR – performed by the world’s leading expert – with the aim of improving their children’s lives forever. We cannot do this alone, and so our friends and family have joined us in trying to raise the funds necessary to take Immy to America to give her the chance to live her life more fully and give her better control of her limbs. We can’t deny her this opportunity to “find her feet”.