A charity has been set up to help a Bognor Regis boy who has a rare genetic condition.
Toni McElligott and her team of fundraisers are endeavouring to raise £50,000 to set up a conductive education centre to help children and adults with neurological difficulties.
The fledging charity Let Me Walk was set up in February, and will help those like Mrs McElligott’s 15-year-old son Owen.
Owen has the condition medium chain acyl dehydrogenase deficiency (MCADD) which affects around one in every 10,000 babies born in the UK.
“One day he was a normal four-year-old running around and then the next day he was in hospital unable to speak, sit, walk or eat.” said Mrs McElligott.
“When Owen was taken into hospital they were not sure what was wrong.
“MCADD means Owen’s brain cannot control his blood sugar levels which prevents his body from converting certain fats to energy, particularly during periods without food.
“The delay in finding out what was wrong with him meant he was left with mobility brain damage.”
This means Owen cannot always control his movements, is unable to walk unaided and has problems with his speech.
About five years ago the family discovered a centre in the New Forest which specialised in conductive education – an alternative therapy. Owen who loves art, found the therapy helped him improve his abilities.
“He has learnt how to eat normally and had his feeding tube removed.
“He can also use his hands better which means he can draw, paint and play with his game boy,” said Mrs McElligott.
The therapy also allowed Owen to take his first independent steps. Since the closure of the centre last summer, Owen’s supporters have being raising money to set up a new one.
Mrs McElligott said: “The therapy is alternative which means despite medical professionals saying it has helped Owen it is not available on the NHS.
“Since the closure of the centre we have been unable to find somewhere suitable for Owen to receive treatment.”
The cost of setting up the new centre would be around £50,000 with estimated yearly running costs of £30,000.
“At this point we are not sure whether the new centre would be in Bognor Regis or in the New Forest where there are already trained specialists,” said Mrs McElligott.
So far £1,000 has been raised but £5,000 is need to enable the charity to become registered.
For more information on the charity email firstname.lastname@example.org