Five-year-old Mila Bennet McNally died in January, following a three-year battle with severe seizures. Her parents, George McNally and Gemma Bennett are now seeking answers about her condition and the treatments available.
Mila developed severe epilepsy suddenly at the age of two, when she had 150 seizures over just three days. Since then her healthcare professionals have been struggling to identify which epilepsy syndrome Mila had. Coming from Belfast, in January Mila was sent to Great Ormond Street Hospital in London for tests. However, the family still don’t know the type of epilepsy Mila had or what caused it.
Her parents claim the hospital applied to Realm of Hope, an American organisation that provides cannabis oil to children and adults with severe epilepsy, Parkinson’s, cancer and Aids/HIV conditions. A Belfast Trust spokesperson passed on sincere condolences to the family but said they could not comment on Mila’s treatment or diagnosis.
The use of cannabis-based medicines remains a controversial area, although research in the UK and US is advancing. There is a growing clamour for access to these medicines among parents of children whose seizures don’t respond to existing treatments. Mila’s parents had hoped that Charlotte’s Web oil, a medicinal cannabis oil, would be made available for their daughter’s treatment. George said: “...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”.
As George and Gemma work to find their answers, the family and community grieve the loss of the little girl. Her school principal, James Curran, said: “Getting to know her and her family was a joy. Mila was one of our little stars and brought joy to the classroom every day”.