Keep Billy alive pleads mother

A local mother has pleaded with the public to raise funds for treatment to save her son's life.

Friday, 30th September 2016, 2:25 pm
Updated Wednesday, 5th October 2016, 2:34 pm

Charlotte Caldwell, from Castlederg, has taken her 11-year-old son Billy to America for life saving treatment that is unavailable here.

Billy suffers from a severe form of epilepsy which cannot be controlled by drugs. He also can’t come out of the seizures on his own and Charlotte has to administer medication and oxygen to help stop them.

Her son started having seizures at four months old and at his worst was suffering up to 100 a day.

Billy was initially sent home from the hospital for palliative care, however Charlotte searched for treatment programmes.

Charlotte took her son to America when he was two to see a specialist in epilepsy.

The specialist, Dr Nordil, removed most of Billy’s medication and changed his diet to a ketogenic diet.

Charlotte said the results of this treatment was ‘amazing’ and Billy did not suffer any seizures for sixteen weeks.

Her son then received intense physiotherapy and for the first time he could stand, crawl, walk and lift his own head.

They remained in America for two years and then went to Oxford for a further 18 months.

Charlotte has had to fight, including launching court proceedings, and fundraise throughout her son’s treatment.

They eventually returned home to Castlederg in 2010 and Billy’s seizures remained under control.

Billy led what Charlotte describes as a ‘great wee life’. He would go swimming, horse riding and was enrolled in a programme at a special needs school in Omagh.

All that changed three months ago when the seizures returned ‘stronger than ever’.

Charlotte has returned to America to have Billy assessed again by Dr Nordil, who is a world ranking specialist in the condition.

She says he believes that prolonged seizures have left lesions on her son’s brain and these could possibly be surgically removed.

‘These lesions can actually become the focus for life threatening seizures. The surgery aims to remove the focus’.

‘We don’t yet know if Billy is a suitable candidate for the surgery. He is undergoing tests and scans and the family we hope to know by the end of this week if he can have it’.

Charlotte said she is remaining positive because the quality of life her son had ‘makes me want to keep him alive more than ever’.

‘Billy is in good hands but a world ranking specialist comes at a high price. I would ask the public to help because we are desperate my son could die’, Charlotte added.

To find out more information go search for Keep Billy Alive on or to donate visit