Ben's Story so far
A Family Devastated
Ben has been seen by some of the country’s top consultants. Despite the many appointments in various hospitals and the huge amount of tests that have been carried out, no one in the medical profession can diagnose Ben’s condition. Whatever the cause, Ben’s problems are due to a brain abnormality. He has been given the label of ‘Global Development Delay’, which
isn’t a diagnosis but a vague description of the day-to-day problems Ben faces.
Ben's American Adventure
St Louis Children's Hospital
The orthapeadic surgeon at Kettering General Hospital was only able to offer the conventional surgery that has been carried out in the UK for over 20 years. This involved extensive open surgery and post-op plaster casting for 8 weeks.
Even the UK's specialist centre, the Nuffield Orthapeadic Centre in Oxford, were unable to offer anything different.
The opinion of both surgeons we saw in the UK was one that Ben was too old for anything to make a difference to his abilities now.
Thankfully a wonderful surgeon in St Louis USA proved how wrong they were. .
Ben is unable to roll, crawl, stand or walk. He has learning difficulties and poor communication skills and no real speech. He relies on adults for all his personal care, feeding and mobility. He has problems with his balance, spatial awareness, coordination and gets worried when doing things out of his routine. He needs a wheelchair to get around in when outside and a special seating system to maintain his posture when indoors.
As Ben became a teenager, he went through the usual growth spurt as all teenagers do.
Because he wasn't able to walk, the muscles were unable to stretch with the bone growth, resulting in severe muscle contractures in his legs and feet.
If Ben was ever going to walk, these contractures had to be reversed and this could only be done through surgery.
Despite the many problems he has to overcome each and every day, he is a cheerful and cheeky lad who melts the hearts of everyone he meets.
Ben was 8 months old when we noticed that he wasn’t holding his head up in the same way our older children did when they were his age. We went to see our GP and very quickly found ourselves in the difficult and stressful world experienced by parents with a child who has disabilities.