Medical News Today helped fund treatment for Daniel Pretty, a young boy living with cerebral palsy. In this article, Daniel's mom Catherine relates the story of his operation and recovery from the procedure:
My son Daniel is a wonderful, bright, cheerful 6-year-old boy who lives with cerebral palsy. To be specific, he has spastic quadriplegic cerebral palsy. The "spastic" part of that name means that his muscles are very tight, and the "quadriplegic" part means that all four limbs are affected, or more accurately, his whole body is affected by the condition.
He is unable to stand unaided, walk without a walking frame or even crawl along the floor. He depends on adult help to do almost everything that other 6-year-olds take for granted, including dressing or going to the toilet.
We are very lucky, in that Daniel can eat, drink and talk relatively easily, but he is very quietly spoken and cannot take deep breaths, as even these muscles are affected. His dexterity is limited, so handwriting is a real struggle, and there certainly were not any fiddly toys like Lego for Christmas!
Cerebral palsy (CP) is not a degenerative disease, so it does not get worse as the child grows. At least that's the official line. In reality, the muscle strength that is able to carry the weight of a 3-year-old child often is not able to support a teenager, so many young children that can use a walking frame struggle to do so later in life as they grow older and get heavier.
The predictions for Daniel's mobility later in life were not great; it was considered almost inevitable that he would end up using a powered wheelchair to get around.
An operation called Selective Dorsal Rhizotomy (SDR) gave us hope. This is a spinal operation that cuts the nerves carrying the most extremely spastic signals, leaving other nerves intact.
A drastic measure, it is one that permanently removes most of the child's spasticity. A crude version of this operation has been used for many years and involved cutting into much of the spine, but a less invasive operation was pioneered by Dr. TS Park in St. Louis in the US 20 years ago. Dr. Park operates on a single lumbar vertebra, meaning that the risks and the side effects of the operation were minimized.
In 2013, Medical News Today wrote a feature outlining Daniel's journey to this pioneering surgery.
We first heard about SDR when our son was a toddler, as family and friends sent us newspaper articles featuring a little girl who had gone to the US for the operation. Our local professionals did not have experience of any children having the operation, and they were not enthusiastic about the benefits that it might bring to Daniel, as he is at the more severely affected end of the scale of classic candidates for SDR.
At that time, the operation was not provided or supported by the National Health Service (NHS) here in the UK, so it was something we put to the back of our minds. Over the following couple of years, we were immersed in the day-to-day business of family life, bringing up a disabled child and his younger sibling.
It wasn't until May 2013 when we were given a rare break and a day of childcare that we were able to sit back and look at the big picture, and think about the long-term implications of doing nothing. I remember walking on the South Downs of the UK in the spring sunshine and talking to my husband Simon - there and then we decided that we should investigate SDR more closely.
SDR not a cure for cerebral palsy, but it removes spasticity
We joined two fantastic Facebook support groups, and through those, we met many UK families who had taken their children to the US for the operation. They were hugely enthusiastic about the changes they had seen, so we were encouraged to look further.
The St. Louis Children's Hospital website is a fantastic resource for anyone considering SDR, and we pored over it daily. From there, we were able to find out more about the operation and precisely what it involved.
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