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A Life Changing Journey

Jenson is 5 years old and will be setting off on a life changing journey at the end of this month! Jenson has Cerebral Palsy (Spastic Hemiplegia) and is flying out to the US with his family for an operation that will make a huge difference to his life. I thought it would be perfect timing to share this with you as I just found out the other day that March is ‘Cerebral Palsy Awareness Month’ and wanted to give you a little background to the story.

It was at the end of last year (when I was at a local event trying to raise awareness about our community) that I heard about Jenson and that his family and friends were trying to raise funds so that he could receive surgery in the US as he didn’t meet the criteria for surgery in the UK. I was also particularly interested in their story, as they live in our city, and realised that their experience would not only help those within the UK but also those in a similar situation in other countries.

So, in brief, Jenson’s operation will take 2 1/2 to 3 hours and they will be operating on the nerves in his spine (in the selective dorsal rhizotomy procedure) then in the second procedure they will do Jenson’s hamstrings and heelcords. He will be discharged after five days and then will receive daily physiotherapy which will continue for five weeks! Katie, his mother, has promised to keep us informed along the way as post op will continue for anything up to two years. He has a long road ahead of him, and is obviously a very brave boy and is no doubt very excited too; not just about the trip and the immediate relief that he will feel, but it will also mean that Jenson will have to undergo a lot less pain/treatment as he gets older. It’s a wonderful opportunity for him and they have received some fantastic support AND reached their target just today – of which I know they are very grateful for!

Katie shared their story which you can read here. It includes the ‘pre-op evaluation’ video that they sent to St Louis Children’s Hospital which you will find interesting. We’ve also included links to a wealth of information, that Katie has put together to help others, as well as a link to their Facebook group. So feel free to contact them if you would like more information or have any questions.

A note from Katie: Starting on March 16th you will be able to watch ‘The Frontline for Hope‘ a six part docu-series about St Louis Children’s Hospital where Jenson will be having his surgery.

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