THE feeling of helplessness was paralysing. Grace Beverton’s father watched as his five-month-old baby daughter convulsed.

Grace’s parents noticed her twitching on her baby monitor and when her dad went to check, her body was shaking, and she was foaming at the mouth. The ordeal lasted nearly an hour.

Her dad said: “We called 999 and the fantastic paramedics took us straight up to A&E. We had no idea why this was happening, or what was going to happen next.

“After various medications they couldn’t stop the seizure so Grace was sedated and ventilated to keep her stable and safe.

“That night we were transferred to the nearest paediatric intensive care unit which had space for her, which was at Addenbrooke’s Hospital.

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“Grace had various blood tests, a CT scan and a lumbar puncture procedure which still could not provide us any answers to why this had happened.

“A neurologist suggested there could be underlying genetic reasons and we signed up to a research project which would be able to give us a full genetic test.

“On February 1 we were discharged to go home, with no exact answers but a plan in place to try and find out.

“At 4.45pm the same day, we were back in an ambulance, heading to Colchester Hospital. Grace was having another seizure, and the same process followed.

“They couldn’t stop it, some of the nurses were in disbelief that we were back again, the same hospital and the same cubicle as before. Grace had to be sedated and ventilated for the second time but this time the nearest unit with a space for her was St Mary’s Hospital in London.

“We were transferred via the wonderful Children’s Acute Transfer Service. Grace had a further five seizures within the following two weeks, she had an MRI scan, more metabolic blood screenings and was started on anti seizure medication.

“She had been sedated for the third time during another prolonged seizure, but during the others she had responded well to emergency rescue medication. We were transferred back to Colchester Hospital, thankfully closer to our family and friends.

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“We were discharged home again on February 14, the best Valentine’s Day we could have wished for.”

The family, who live in Marks Tey, now know baby Grace is one of only 17 people in the world diagnosed with a gene mutation which caused the seizures.

Her parents have asked not to be named due the sensitive nature of their jobs.

Grace’s dad said: “This month marks one year of Grace not having a massive seizure, although we’ve had a few scares.

“It’s helplessness you feel when she’s having a seizure.

“As a parent you just want to protect your child but it’s almost like I wasn’t in the room when she had her first one. You just want to grab hold of her and say mum and dad are here.

“The first couple of times I honestly thought Grace was going to die.

“We can’t thank Colchester Hospital enough because they saved our baby’s life.”

Later genetic testing revealed Grace, who is now 18 months old, has a rare gene mutation recently linked to epilepsy. She is possibly just the third person in the UK to be born with it.

While her seizures are more controlled now, her parents face their only daughter not being able to walk or talk and her development being delayed.

With no history of epilepsy or disability in the family, the news about Grace’s condition came as a huge shock.

Her mum, 27, had a near perfect pregnancy but then needed an emergency caesarean because the amniotic fluid surrounding Grace was too low.

Her dad said: “Grace went into the neonatal unit at Colchester because she wasn’t breathing for herself properly but still, her health was perfectly normal until the first seizure.

“As a baby, she’s a happy little soul. She has mini seizures about five times a day, and also is far behind her development as she can’t sit up on her own but otherwise she’s good and healthy.”

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The challenge for the Beverton family is raising £40,000 this year to fund specialist physiotherapy for Grace to learn to sit unaided, leading up to bearing weight on her legs, standing and walking.

Any money raised will also cover the cost of equipment or aids for Grace and any adaptations the couple must make to their home.

A Valentine’s Squares raffle, organised by Grace’s auntie from Clacton, Sally Day, has already raised £1,000. She is also gearing up to complete a sponsored mini triathlon this October.

Each month until summer the family is hosting a new event such as a quiz night in Harwich’s United Services Club on March 1.

A sponsored pub walk will take place from West Bergholt’s White Hart to the Red Lion in Marks Tey on March 9, and in April there will be a coast to coast walk.

Grace’s dad said: “We planned a future as any new parent would, expect our child to walk, talk, head to nursery but with my wife and I it’s been a bit different.

“Unless you’ve gone through it, it’s really hard to understand.

“We’re doing really well with the fundraising and just want to continue. It’s hard for us but there’s been a lot of support from everywhere.”

Follow Grace’s progress at HopeForGraceBeverton on Facebook and donate here.