Mila: The little girl who died from illness with no name
The parents of a five-year-old girl who died from a mystery condition have told of the desperate attempts to save her life.
Mila Bennett McNally from Twinbrook, Belfast, died at the Royal Belfast Hospital for Sick Children 12 days ago despite concerted medical efforts to stop or reduce the severe seizures that the little girl constantly suffered from.
And now her grieving parents are seeking answers about the unexplained epileptic syndrome which killed her.
In her final days, Mila's parents put their hopes in the controversial use of medicinal cannabis oil that US parents claim has had significant benefits in reducing severe bouts of seizures in their children.
George McNally (38) and Gemma Bennett (37) want to know why the medicinal cannabis oil, known as Charlotte's Web oil, could not have been made available to their child in Northern Ireland.
Mila's distraught father George said: "She's away now, there's nothing I can do about it, but if I can make it better for another kid or make a change in legislation for another child so that they are not held back, then it's worth it."
Mila suffered from a severe and complex epilepsy condition in an as yet undiagnosed syndrome which developed when she was two. At that time, she suffered from more than 150 seizures over three days which left her unable to talk or walk.
Despite being sent to Great Ormond Street Hospital in London for tests in January 2013, the nature and cause of Mila's condition is not yet known to her family.
Her parents claimed that the hospital's medical team had applied to the American organisation, Realm of Hope, which provides cannabis oil to children and adults who suffer from severe epilepsy, Parkinson's, cancer and Aids/HIV conditions.
There is a growing awareness of the claims made by doctors and scientists in the US about the therapeutic powers of medicinal cannabis oil. However, it is yet to be licensed for use here and is still frowned upon by some doctors in the UK.
A spokeswoman for the Belfast Trust passed on its sincere condolences to Mila's family but said it could not discuss the child's treatment or diagnosis.
While she declined to give any information on the potential use of medicinal cannabis oil in Mila's treatment, she said: "In exceptional circumstances, where a drug is off licence or not approved by a designated authority such as Medicines and Healthcare Products Regulatory Agency (MHRA) or Food and Drug Administration (FDA), the trust follows a clearly defined process to obtain drugs, which includes gaining approval from its Drugs and Therapeutic Committee.
"We would like to pay tribute to the dedication and professionalism of all the staff in our Children's Hospital who look after children with very complex needs," the spokeswoman added.
James Curran, principal of Parkview School, Lisburn, which Mila attended, spoke fondly of the little girl that he and the staff had come to know.
"We had the privilege of having Mila in Parkview school for a year and-a-half. Getting to know her and her family was a joy," he said.
"Mila was one of our little stars and brought joy to the classroom every day."