THE future for little Ben Williams is bright - with an intense therapy programme which is allowing the schoolboy to make exceptional progress despite living with a condition so rare it doesn’t even have a name.
Last summer the seven-year-old travelled to Florida for four weeks where he underwent mobility and speech therapy with amazing results.
Before the trip, although his epilepsy was under control - a great improvement on the 60 seizures a day he had been suffering - Ben struggled with talking, walking, running, playing, and even the ability to touch and feel things like a hot radiator or scalding tap.
The treatment he underwent at the Ocean Medical Centre unleashed a wave of progress in the Hilltop Special School pupil - which his mum Rebecca, from Swallownest, was keen to build on.
But travelling to America for such therapy was not a sustainable way forward - meaning Rebecca was delighted to discover the Cerebal Palsy Physiotherapy Centre in Bedford.
Although this is not strictly the condition Ben lives with, professionals there were happy to take him on their treatment programmes after seeing the dramatic progress he made in the US.
Elements to the programme include the use of a pediasuit - a special suit which provides skeletal support to promote mobility - and exercises on his mouth and jaw muscles to help develop his speech.
He has even started horse-riding to build his core muscles - an activity Rebecca never thought she would see him take part in.
The 28-year-old said: “The exercises he does over here are quite different, and they have recommended that he is taken back a stage - meaning he has now learnt to crawl, rather than going straight into walking.
But they are obviously just as good and he is progressing really well. Now he sits at the table to eat his dinner, and is able to take control - going and fetching a drink when he is thirsty, or reaching out for the toys he wants to play with.
Compared to the boy he was 12 months ago, it is incredible.”
Rebecca said it was not just the physical progress that she was pleased with - since hand in hand with this had come a huge self-esteem boost for Ben which was amazing to see.
Although Bedford is much closer than America, Rebecca and her family are still faced with a huge fundraising challenge to gather the £820 cost of the treatment over two weeks every six months - not to mention the bills for travel and accommodation.
The latest stunt saw a group of her friends climb Kinder Scout in a sponsored walk in aid of Ben.
Rebecca said the thought of improving her son’s quality of life, both now and in the future, drives her forward.
“I’m so pleased we have found a more sustainable way to help Ben,” she said.
“We don’t know what the future will hold, but it’s exciting to look back at how far we’ve come and think about where we might end up.”
Visit www.fundraise-for-ben.co.uk to sponsor the walkers or make a donation towards Ben’s treatment.