Book of Ben

A little about Ben

Background Story
Ben was born on his due date 24th november 2000. Until he was 2 there where no big concerns for his development. At the age of 2 he started a nursery.

They said he seemed clumsy and his speech wasn’t brilliant. We took him to our doctor, but the doctor wasn’t interested and sent us away with “he is a boy, boy’s are lazy” we believed the doctor. Over the next three years Ben didn’t catch up, he stumbled on his feet,he struggled to talk correctly, but still the doctor was not interested in our worries.

Then the day he started school came, all smartly dressed we took him to school. A week or two went by, Ben was enjoying school and we felt as if he was improving in his speech a little. Then one dreaded day the teacher pulled me to one side and explained all the things Ben was struggling in, My heart sank. We were right all along.

I went back to my GP and asked for a referal to a peadiatrition. There was a long wait until we could be seen. So we were also refered to a local child development center to be seen by an occupational therapist.

6 months later we saw a lovely lady called Narelle and her colleague both O.T’s in our home, she said how she would play with Ben for a while and tell us if we needed any further appointments.

About 2 weeks later we had a letter from the CDC explaining how Benjamin was indeed having global problems and they would like him to remain on there list. At the same time we received a letter to see a peadiatrition.

We went to the appointment at the hospital, armed with some info from the internet on dyspraxia, as this really matched Ben’s symptoms. The peadiatrition wasn’t convinced and said Ben had global developmental delay, nothing more… He would catch up with additional help.

So really we muddled along between paed and CDC seeing physio’s and O.T’s for a while. Many blood tests were done but all negative. Ben still puzzled them all though as although improving he was still getting more wobbly on his feet, and movements were unco-ordinated.

At the age of 6 Ben still had no idea how to hold a pencil and used a fist grip. Fine motor was very poor too. Speech had gotten better but Ben had began to repeat himself, asking the same questions over and over.

After intensive physio sessions, and extra sessions at school things started to go backwards.. The physio then decided that she no longer could help Ben as “he wasn’t improving” so from then Ben had no physio sessions at all.

We all thought for a long while that Ben had ATAXIA the paed brushed this off, he sent us for an MRI but this was clear ” he has severe dyspraxia nothing more”.. even though letters from the physio stated ataxic movement.

We fought for a helmet as he fell over so often, and some Piedro boots to help support his ankles and feet.

We were now also needing a pushchair for those longer journeys, as Ben couldn’t manage and tired so easily. This we had to fund ourselves.

School was difficult… We asked for assessments for a Statment of special needs, but in the time it took to get the truth from the Educational phycoligist,by the time they gave him a statement, Ben became incontinent, and needed a walker, he had special seating in class and 1-1 help. .but this meant we could finally move him to a special school.

He started his new school all was well, we could not fault them it was perfect for Ben. Then the dreaded phone call came ” Bens had some sort of seizure” Our hearts in our mouths we raced to school. Ben was dazed and sleepy.. a trip to hospital revealed nothing. He had two more purlonged absenze type siezures and was put on some medication to control them.

We went back to the pead and begged once again to see a neuroligist.. He gave in and refered us.

We saw the neuro he said ” I have no doubt we will find a diagnosis”. With in a few months we were in Bristol childrens hospital having a batch of tests, At the last moment an SHO decided bens spleen was large… We will do a skin and muscle biopsy too.

Some weeks later we had a call from Ben neuro ” I have some results, we need to meet and discuss them” Our hearts in mouth we travelled to Bristol.

He sat us down ” we have the results from Bens skin biopsy” “Niemann-pick type C” I questioned him, “How sure are you?”
“99.9 percent so” ” Mid to late teens is the prognosis” with that we left .. Numb, shocked, a bit of denile…

So after our long fight for an answer… we had one.

Ben is a loving, happy, brave boy. He has the ability to captivate a room with his smile. He loves nothing more than his sisters playing games and making him laugh.He loves music and has a passion for Tom and Jerry cartoons. Even though he has had to cope with alot of fast changes in his condition over the last year, that have left him without speech or mobility, he still manages to smile and giggle through the day.