Max is aged 5 from Rugeley in Staffordshire He was born at 34 weeks weighing 5lb 6oz. Within a couple of days Max became very poorly due to lack of calcium and sodium which unfortunately caused neonatal seizures and his oxygen to drop. We were told upon discharge that Max has damage to his brain called Periventricular Leukomalacia (PVL).
Max has now been given the diagnosis of Quadriplegic Spastic Cerebral Palsy. This means his limbs are too tight and he has difficulty doing tasks that we all find easy. He has nearly mastered sitting through lots of hard work but still needs help standing and is unable to move independently. The brain damage also affects his eye sight and as yet we still don’t know how much he can see. He’s also recently been diagnosed with epilepsy.
Max has been accepted to have SDR (selective dorsal rhizotomy) at Alder Hey. This would be a permanent fix for his tight muscles that control life and stop his progression. He is already on Baclofen and having regular Botox but the results don’t last. This could be life changing for Max and although it may not make him walk it would mean he would have a pain free better quality of life without the muscle spasms.