Jack Mordecai's SDR Surgery Fund

Our son, Jack, who is 9 years old, was born prematurely at 26 weeks and spent 3 months in hospital. A scan at 20 days old showed that he has periventricular leukomalacia (or PVL). At 12 months old, he was diagnosed with cerebral palsy. It is the cysts on the left side of his brain which have resulted in his spasticity.

Fortunately, his speech and mental capabilities are relatively unaffected. It is mainly the physical symptoms of his condition that hold him back. He has had innumerable hospital admissions since he was born but just takes everything in his stride, always with a smile.

The spasticity in his legs makes his muscles tight and painful, which in turn affects his balance and coordination. At the moment he is taking medication to ease the condition, but with his growth spurts comes increasing tightness. The problem at the moment is that when we have tried to increase the medication, his body becomes too limp, and as a result compromises his cognitive abilities.

The doctors have explained this to us and have given fresh hope with an alternative to the medications, which is an operation called Selective Dorsal Rhizotomy (SDR). The procedure will be life changing for Jack by permanently eradicating the spasticity in his legs and in turn giving him better posture overall and a much improved quality of life.

We've been told that Jack is an ideal candidate for SDR and that he may benefit greatly from it. The procedure involves probing and cutting the misfiring nerves in the spinal cord that contributes to spasticity in Jack's legs.

Choosing surgery for our child has been an impossible decision to make but we are now confident it will drastically improve Jack's life in movement, posture, reduced pain and give him a level of independence with his daily activities.

Going forward, he would no longer need the medications that compromise his potential. We will still have the Jack we all know and love, with his unique personality and unhindered cognitive abilities.

We have always seen a huge potential in Jack, but for the spasticity holding him back.

Unfortunately, the NHS stopped funding this operation in 2015, and the cost is £16,000. You can find out more about the operation here: Alder Hey - SDR Information.

Any help you can give, no matter how small, to Jack to get the treatment he so desperately needs and greatly deserves will be enormously appreciated.

Thank you for taking the time to read our story xxx

Jack has featured in a 'Patient Experience Film' for Whiston Hospital's NHS Staff Awards Evening which was held at AAC Liverpool on Friday, July 3rd 2015. Take a look at the snippets of Jack from the video here...