Ben was born on the 11th April 2006.
The first week of Ben's life was hard, he wouldn't feed well and by the time he was eight days old he had already lost 20% of his birth weight, he and Mother were admitted to the Bristol Children's Hospital for a feeding plan.
A scan of his head that been taken revealed that he had suffered a massive brain haemorrhage at birth which gone undetected and is still considered a freak bleed. Things were not looking good for Ben and by that evening he was transferred to the Barbara Russel Unit at Frenchay Hospital in Bristol which was to become their home for the next 6 months. That night Ben went to theatre and his parents were told to prepare themselves for the worst.
Cutting a long 6 months short, Ben survived ten surgeries, nine of which were invasive brain operations and the other to fit a cannula into his tiny leg as by this time all his veins had collapsed which resulted in a deep vein thrombosis heading for his heart.
After four incidents of meningitis Ben was left with hydrocephalus (fluid on the brain) which is being controlled by a shunt inside his head draining down to his peritoneum.
At 18 months while taking a nap his Mothers worst nightmare happened when he began to fit, tonic clonic. A frantic dash by ambulance took them back to the Children's Hospital and for the next 45 minutes in resuss they tried to bring the seizure under control. Eventually Ben's seizures have become less frequent though he will have to take medication for the rest of his life, he is, however at risk of sleep epilepsy and his Mother needs to sleep with him every night.
As a result of his condition one of the things that Ben cannot do is climb, stairs are impossible for him and he has to be carried, this is especially hard for his Mother as she suffering with osteoporosis.
Getting him in and out of the car is a problem for her, they applied for a car seat adaptation but were turned down due to Ben not being permanently in a wheel chair, his parents have looked for another solution and have found an electric car seat called a Turny which will turn the seat and then lower him to the ground solving the problem "“ however this seat is in excess of £5,000.
Ben is happy at primary school and has a dedicated classroom helper however Ben cannot grip a pencil as he doesn't have fine pincher movement in his fingers, the bleed he had is very like a stroke and affected his right hand side, which would have been his natural leading side, therefore he is trying to learn to write with the "wrong hand" which can be difficult at the best of times, and as Ben has brain damage and no co-ordination skills it is almost impossible for him. He is learning his alphabet and numbers, they don't think he will ever be able to write but he does recognise symbols on a keyboard and has the ability to point his finger. His teacher feels that he would benefit from the use of a tablet or ipad.
I'm trying to help this lovely family but we cannot do it on our own and need all the help we can get - thank you x
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