Better Life for Ben

17 June 2019
Ben's Story

Just4Children are fundraising for a life changing operation called SDR (Selective Dorsal Rhizotomy) and post-op physiotherapy and rehabilitation, which will give Ben the chance of a better life.

Ben is aged 9 and lives in Sheringham in Norfolk. Ben and his identical twin Alex were born prematurely at 29 weeks in Bolton Lancashire, both boys were seriously ill and heartbreakingly Alex passed away after just 4 days.

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 has recently been accepted for an operation at Great Ormond Street Hospital called SDR (Selective Dorsal Rhizotomy). This would significantly 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. Seven years have been spent exploring every option available to help Ben, and it's been advised that action needs to be taken before he hits puberty. All non-surgical options exhausted and now he needs to have SDR which will provide 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 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.

Please help us to raise £60,000 to allow Ben to live a more comfortable, dignified and independent life. For more information please visit website here Better Life for Ben

There will be a Greek Night held at Constantia Restaurant in aid of 'Just4Children' on behalf of "A Better Life for Ben" The evening on Friday 21st June at 7pm will include, Greek music, meal, dancing and Raffle (This includes a £5 donation to “A Better life for Ben” - Just 4 Children registered charity No1164473) Tickets are available from Charlotte Norton 07855389620 or Constantia on 01263 512017 Email hello@betterlifeforben.com


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