Jenson Ford was born on the 8th of October 2007, which makes him now just turned 5. He was born by elective caesarean section due to concerns about his birth weight, it was estimated he would be a very large baby and due to a previous very long and difficult labour that resulted in an emergency caesarean section with his older sibling Cameron.
There were no apparent complications at the time of delivery and, two days after his birth, Jenson was allowed to come home to our house in Peterborough where mum, dad and Jenson’s brother (who was almost 5 at the time) were eager to include him in our family home.
Everything seemed ok at the time but looking back now there were some defining factors that should have alerted us that something wasn’t quite right with Jenson. He was slower reaching the normal milestones that you would expect. For example, sitting unaided this wasn’t achieved for a long time and crawling was never up on hands and knees. At about 6 months old, we noticed that he kept his right hand clenched all the time and his leg pulled in tight. That was when we decided to visit his health visitor.
By the time we had seen the health visitor, and he had been referred to several other doctors, and to the hospital for an MRI scan, he was 8 months old. That was when he was diagnosed with Cerebral Palsy – Spastic Hemiplegia. This means his right side of his body is partially paralysed.
Jenson is now 5 years old and a happy boy generally. He does get very frustrated at times though – especially when he cannot achieve the things he wants to. This is typical in children with Hemiplegia and behavioural problems are the norm. He is very independent and strong willed. He is always pushing himself to exceed his limits and will only ask for help if he needs it. He loves to play fight with his older brother. He loves to do jobs – the best that he can with daddy who is a builder. He loves music. Any chance he gets, there will be music on so he can bop along. He likes toy cars, tractors and trucks and riding his bike. He begs and begs for the stabilisers to come off but we all know he cannot do this.
The surgery we so desperately want for Jenson is called Selective Dorsal Rhizotomy ( SDR) and is available in the USA at St Louis Children’s Hospital in Missouri. The surgery can be done by an amazing man, Doctor Park, who has helped hundreds and hundreds of children. This surgery is not available widely in the UK or for children that don’t meet the strict criteria. The current criteria is for children who have Cerebral Palsy – Spastic Diplegia.
We came across this surgery quite by chance when looking at an online tabloid one night. There was an article about a little boy who has hemiplegia also having travelled to America and undertaken this surgery. It was at this point, the research into this surgery started, and we decided it had to be something we would be mad not to consider.
The advice offered to us by Jenson’s consultant has been minimal. I am not sure if this is because so little is known and understood about this in the UK. We have spoken to so many great people online and via e-mail about their experiences and no question is ever too much trouble.
We have received the news we had all been waiting for. On the 19th of October 2012, (3 weeks after submitting Jenson’s evaluation video, x-rays and medical details to St Louis Childrens Hospital) we were told that he had been accepted for surgery and was an ideal candidate. This was an incredibly emotional time and the following chapter of our lives started.
Fundraising started, and to date (including gift aid) we have raised around £35,000. We have done dress-down days at workplaces and schools, bacon roll mornings, cake sales, a firewalk (walking across hot coals), a big band day, firework night… the list is endless. We are also having a 3 hour Zumbathon and a Clothes Swish.
Jenson now has a surgery date of the 28th of March 2013 and we will be heading out stateside on the 23rd of March. A massive adventure for us all and particularly for Jenson who has never travelled by aeroplane. He is very excited and wants to know what he can eat on the plane and what he can do. The questions are also starting to emerge about his surgery and the hospital and he genuinely seems very excited. I hope this paints a small picture of what Jenson’s Journey is. Any other questions please ask.