'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.
While the hospital tried to get the cannabis oil for Mila, in the end it was all too late. She died at 8pm on January 23.
"I'm trying to figure out what to do with my life to make her life worthwhile," said Mila's father George at her grandmother Margaret's immaculately kept home in Glasvey Drive.
Photographs of Mila and cards and mementoes from friends are dotted throughout the house as the family try to come to terms with her death.
"I believe that precious time was wasted," said George. "If they had got a replica (of the cannabis oil) from England and stopped the seizures in one hour, then my child could have stood a chance.
"Her brain was swollen because the seizures wouldn't stop. If she had have been given that oil, then it might have saved her. I believe that 100%."
George poured his heart out in a deeply poignant expression of grief written on behalf of his family for a newspaper death notice.
Parts of his notice read: "I can't breathe when I think of the moment you left us, your little heart stopped beating, that little butterfly beat just faded, then I looked into Mummy's eyes and I saw that lovely sparkle just disappear, something went out inside mummy, she lost a piece of herself, it went with you Mila."
"You touched and lit so many lights in people's hearts that you'll never know."
"To think we pinned our hopes on a plant that never came.
"I would have moved this world to another galaxy if I thought it would have cured you."
Apart from arriving a week early and having a hole in her lung which later closed over, Mila at first seemed to be an ordinary, healthy child, her mother Gemma said.
"She was lent to us, not given, that was what the priest said. Now, looking back at photographs of her this year, I can see she was very frail," Gemma added.
"She really suffered, she really did. She constantly had fits over the last eight weeks, they just wouldn't stop. All the nurses and the staff at the Royal were very fond of her, they called here with us, even cleaners called up."
Gemma told how the devastating illness began when Mila was aged two and took a "wee turn" at home. It was initially thought to be as a result of an infection, but then a few months later she had started to have up to 50 seizures a day.
These continued periodically until she died. Despite extensive medical treatment and tests at Great Ormond Street Hospital, experts have still to determine the cause of Mila's condition.