'Little Mila McNally really suffered. She constantly had fits in the last eight weeks and they just wouldn't stop'

Little Mila Bennett McNally inspired extraordinary love and devotion during the five short years of her life.

So much so that almost the entire community of Twinbrook in west Belfast shares in the deeply-felt loss of a child who suffered and eventually succumbed to an as yet undiagnosed syndrome.

With her huge blue eyes, curly red hair and porcelain skin, Mila was the pride and joy of her parents, her older brother Carl and the close family that surrounded her.

She was doted upon, both at home, at the Parkview School in Lisburn where she attended and by all who looked after her in hospital.

To those who came into contact with her, her death feels personal, like losing one of their own.

Mila is just one of the special children born each year in Northern Ireland who instead of enjoying a normal, healthy childhood face a desperate fight for life.

She died 12 days ago even as desperate final attempts were being made by her parents and the medical team at the Royal Belfast Hospital for Sick Children to get cannabis oil from the US to help stem the constant seizures which she had suffered from since the age of two.

Mila had been in hospital for nearly eight weeks and was a seriously ill child.

She constantly experienced seizures which caused her brain to swell and over the years a range of medicine and treatments had been tried in an attempt to reduce them.

The last hope was to obtain a little-known product called concentrated medicinal cannabis oil. Also known as Charlotte's Web oil, and supplied by the Realm of Caring Foundation in Colorado, USA, it is reputed to alleviate the symptoms of many other debilitating conditions, such as cancer, MS, HIV/Aids, epilepsy and Parkinson's.

Encouraged by reports from other parents who believed that the cannabis oil greatly helped their son or daughter's condition, Mila's parents George McNally (38) and Gemma Bennett (37) urged the Belfast hospital to apply direct to America to obtain the product after it was learned that a trial of the drug at London's Great Ormond Street Hospital would not be starting in time to help Mila.

http://www.belfasttelegraph.co.uk 04/02/2014