Mum's fight to spread word of baby daughter's rare condition which causes 'constant' seizures

Jasmine Blackburn has already been through so much at the tender age of eight months.

Diagnosed with a rare genetic syndrome called Aicardi in May, the Hebburn youngster suffers ‘constant seizures’.

The condition also causes developmental delays and structural brain abnormalities, meaning that Jasmine has no corpus callosum – the structure that links the two halves of the brain together.

As a result, the baby girl can’t move her arms and legs because her brain is unable to send the right signal to her body.

Jasmine also has bilateral polymicrogyria – a rare neurological disorder that affects the outer surface of her brain – as well as a developmental condition called pachygyria.

Mum Sharron Bonehill, 40, who is a full-time carer for her daughter, said: "I worry because Jasmine could die at any time due to the seizures.”

Jasmine was born on February 10, 2020, at Sunderland Royal Hospital.

There were no immediate signs that anything was wrong with Jasmine and scans during pregnancy didn’t detect any problems.

But once home from the hospital, the baby started having what mum Sharron believed at the time to be fits.

“She would go blue in the face and her eyes would flicker. I kept going to the doctors saying that something is wrong with her but they thought that it might be colic,” Sharron said.

"I started to record episodes on my phone and went to show the doctor the video, but when we were watching it Jasmine started having a seizure.”

At three weeks old, Jasmine was taken to South Tyneside District Hospital and put on a SATS machinebut immediately started having a seizure.

She was given oxgen before being transferred to Sunderland Royal Hospital but had a further seizure in the ambulance.

Sharron added: “I was beside myself – I didn't know what was going on. They had to sedate her but they couldn’t stop the seizures.”

Jasmine was put on an EEG machine to monitor her brain activity, but the worried mum was told her baby girl was still having seizures, despite being sedated.

An MRI scan then found Jasmine had bilateral polymicrogyria and no corpus callosum, with mum Sharon told to prepare for the worst.

Jasmine returned home from hospital after three weeks, but was still experiencing seizures. Then, there was a breakthrough when Jasmine was three months old.

An eye test at Sunderland Royal helped doctors diagnose her with Aicardi syndrome.

In an effort to control her seizures, Jasmine spent five months in Newcastle’s Royal Victoria Infirmary under the care of the neurology team.

Now back home, Sharron says Jasmine still has daily seizures which are managed with a combination of medicine and a ketogenic diet.

The youngster is also peg-fed and on medication to help her digestive system.

Although further tests have to be carried out, the mum says Jasmine is considered to be blind – and that her daughter’s condition must be like ‘living in a fog’.

She added: “I didn’t know about the syndrome before I had my daughter. I think things may be picked up sooner if there is more awareness of what Aicardi syndrome is.”

Aicardi syndrome awareness day is marked worldwide on November 8.

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