A young girl is learning to walk and talk again after surgeons had to disconnect half her brain.
Lilly-May Harris is just four-years-old but has already undergone a major operation, after being diagnosed with Rasmussen syndrome.
The extremely rare condition affects just one in 1.8 million people and left Lilly-May suffering from seizures which grew in frequency and intensity.
To save her life, parents Carly and James made the decision for their daughter to have surgery which would disconnect half of the young girl’s brain.
Now, Lilly-May, from Exeter, Devon, has been left with only half her brain working but is already making a miracle recovery.
Lilly-May had her first seizure after coming home from pre-school seven months ago.
Carly recalled: ‘I didn’t know at the time it was a seizure because it was facial and looked very similar to a stroke.
‘When I took her to hospital I was told children have seizures for lots of different reasons, but the next day she had another one.
‘They went from daily to twice a day so she was sent for a biopsy in August, and she was still absolutely fine in herself. We were told it was epilepsy.’
4 year old girls ‘miracle recovery’ after life-saving operation
Despite the seizures increasing in frequency, Lilly was well enough to enjoy her first day at school last September.
However, after three weeks she became too poorly to keep going.
Carly said: ‘Her seizures spread from facial to her arm and she lost the use of her arm very quickly. They then started to affect her legs.
‘We continued to see her go downhill to the point where doctors in Exeter were in tears as they had not seen a deterioration like it.
‘They didn’t know what they were dealing with as it is so rare, and they didn’t know if she would make it.’
Lilly’s care was transferred to the Bristol Royal Hospital for Children and it was confirmed she had inflammation of the brain and there was no signs of a tumour
The condition she was suffering from was then diagnosed.
‘It was a relief because up until then we had no clue what was going on,’ said Carly. ‘We just wanted a reason why. It was horrible when we were told, but we then knew what we were dealing with.
‘The only ‘cure’ was surgery to disconnect the affected side.’
Lilly was in the operating theatre for 18 hours while Carly and James anxiously waited to see if she would pull through.
Carly continued: ‘Lilly’s brain had become so inflamed the operation took three times longer than they initially thought. Just 10 hours after her surgery she couldn’t open her eyes but she gave us a thumbs up.
‘That literally was all we needed because we didn’t know what she would be like after the surgery.’
She remained in the intensive care unit for five days afterwards and the first two months were seizure free.
Now, however, she is having seizures daily but they are less severe than they were before and Carly is waiting to hear if Lilly-May can have another MRI scan.
Despite this, Lilly-May is making a ‘miraculous recovery’ having regained her speech and some movement.
Carly, 30, said: ‘We have never heard one whinge from Lilly. Even after her surgery, having lost movement and half her sight she did not moan once.
‘All my family and friends are in awe of her. They can’t believe she is such a smiley child despite all she has gone through and she is still as kind and loving.
‘She makes me so proud. She has lost the use of the left-hand side of her body but is doing absolutely brilliantly.
‘The operation was life-changing, life-saving, miracle surgery which has given me my daughter back. The surgeon is worth his weight in gold.
‘She’s not exactly the same but to have her character back is absolutely amazing. She is talking and still needs a wheelchair but is already learning to walk again.
‘Even now I don’t understand how someone can live with half a brain disconnected.
‘When I sit reading to Lilly-May I look at her and think, she only has half a brain, and yet she does not look or seem any different.’
Rasmussen syndrome is a rare neurological disease that causes cells in half of the brain to inflame, causing seizures and loss of motor skills and speech.
The illness generally affects children under the age of 15, and can cause dementia.