THE mother of a young girl with a rare genetic condition met with senior Welsh politicians on Tuesday (July 3) to call for a special diet to be made available for sufferers in Wales.

Ella Wheatley, of Monmouth, is one of 1,000 patients across the world who suffer from GLUT1, a genetic disorder in which people lack a protein to convert glucose into energy.

The most common symptom is epileptic fits but the ‘ketogenic’ diet can alleviate symptoms.

Mrs Wheatley met with Welsh Assembly members at an epilepsy awareness event at the Senedd in Cardiff to push for the ketogenic diet to be made available in the Principality.

Ella was finally diagnosed after a genetic test in October 2017 and is now on the ketogenic diet through Bristol Children’s Hospital.

Mrs Wheatley said: “The ketogenic diet is a proven treatment method.

“The NICE (National Institute for Clinical Excellence) state that the ketogenic diet should be offered following two failed standard medications.

“For those with GLUT1, it is the only treatment option.

“Treatment normally stops when the patient turns 18 – this, again, will cause issues for my daughter and other GLUT1 patients.

Mrs Wheatley said Ella had a “typical journey” to GLUT1 being recognised after several incorrect diagnoses.

Ella stopped breathing at the age of seven weeks and that happened again on several occasions.

Her mum claims the results of a lumbar puncture test at five months were “ignored”.

She said: “For almost five years, Ella was misdiagnosed many times, with ‘behavioural issues’ being the most common diagnosis.

“This journey is similar to all others living with GLUT1 today.

“GLUT1 patients have been, and continue to be, failed.

“This is true for many others with complex epilepsy in its varying forms.

“We have endured an uphill struggle to reach a diagnosis.

“The struggle continues on a daily basis.”

The ketogenic diet is high in fat and low in protein and carbohydrate and simualtes the metabolism when fasting.

When glucose levels are low, the body burns fat more quickly to produce energy.

This leads to a residue of ketones – which are left after fat is burnt – to become concentrated in the blood.

The build up of ketones prevents the electrical disturbances in the brain that cause seizures.

The diet usually starts with a ratio of four parts fat to one part protein.

Around 90 per cent of total calories are derived from fat, usually in the form of butter, oil and cream.

To find out more about GLUT1, visit www.matthewsfriends.org or www.thedaisygarland.org.uk