A Better Life For Ben

Ben and his identical twin Alex were born prematurely at 29 weeks. Both boys were seriously ill and heartbreakingly Alex passed away after just 4 days. We were then told Ben had suffered a bleed to the brain and there was a significant chance he would have Cerebral Palsy. Ben continued to fight and after 10 weeks in Neonatal care at Bolton and Trafford hospitals, he finally came home on Oxygen. He was diagnosed with Spastic Diplegia Cerebral Palsy at 2 years old.

Despite his disability, Ben is a happy, friendly boy, who takes a great interest in the world around him. However, as he grows the muscles in his legs become tighter, causing discomfort, and hindering his mobility and independence. Until a couple of years ago, Ben was able to walk with a gait trainer, but unfortunately, as he has grown, he has now lost the ability. Ben is now a full-time wheelchair user. Ben was recently accepted for an operation at Great Ormond Street Hospital (GOSH) called Selective Dorsal Rhizotomy (SDR). This will hopefully improve his quality of life, by removing the spasticity and therefore helping to manage the discomfort he lives with on a daily basis. It would increase his mobility and allow him the opportunity to perform daily activities that most of us take for granted.

We have spent the last 7 years exploring every option available to help Ben. We have exhausted all non-surgical options and believe SDR will provide Ben with a long term solution to manage his spasticity.

Last year, the NHS began providing SDR to children graded GMFCS Levels 2 & 3. Ben has been graded a Level 4, and therefore, whilst he is eligible for the operation, it will not be funded by the NHS. Currently at GOSH this is £35,000. A condition of this offer is that we will need to self-fund a minimum of 2 years intensive physiotherapy, and any equipment which he needs for his rehabilitation, which will be around £25,000.

Thank you for taking the time to read Ben’s story.