Little Lauryn was only six months old when she woke up screaming in the middle of the night with her first seizure.
But at that stage it wasn’t clear she was suffering from epilepsy because her body wasn’t shaking.
“It’s not how I thought epilepsy was,” mum Carol Bowers explains. “She was screaming and rigid.
“We would just pick her up and give her a cuddle because we thought it was night terrors.
“Then she would come round and cry, then go back to sleep.”
‘She was blue and lifeless’
Then, one night just before Lauryn’s first birthday, the situation got much worse.
The Newmachar family were getting ready for a fireworks night when Carol, 37, noticed her young daughter was upset.
“I picked her up and she couldn’t get her cry out and she went unconscious,” she said.
“I took her outside to see if the fresh air helped and when I took her back inside she was blue and lifeless.
“I phoned 999 and had to give her mouth-to-mouth CPR then she started breathing again. We didn’t know what was going on – it was absolutely horrific.”
Lauryn was rushed to hospital in Aberdeen where it became apparent she was suffering a prolonged seizure which wouldn’t stop. She was placed on a life support machine.
In the early hours of the morning, she was flown down to The Royal Hospital for Sick Children in Edinburgh where she spent five days in intensive care.
“I asked if she was going to be OK and they said yes. But they didn’t know the impact the seizures would have on her,” Carol said.
‘There was an ambulance at our door every week’
Lauryn underwent several tests, including an MRI scan and a lumbar puncture procedure.
She was diagnosed with epilepsy after doctors found unusual electrical activity in her brain.
They prescribed different medications in the hope they would control the seizures after she was discharged from hospital.
But her condition continued to deteriorate.
“She was given medicine and there were a few months of seizures and 999 calls – there was an ambulance at our door every week,” Carol said.
The family were full of hope when the third medication kept everything under control and Lauryn was seizure-free for more than a year.
“Those was the best 14 months of our life,” Carol said.
“She was a happy, funny, bright little girl who went to playgroup, play dates and parties and she was constantly singing.”
But then there was a turn for the worse…
However, the seizures returned in October 2018 when Carol was pregnant with her second child.
Lauryn’s medicine was increased and her seizures continued. Six months later she suffered more than 25 in one night, losing the ability to walk.
“The doctors wondered if her leg muscles had been damaged from the seizures and we needed to keep an eye on her,” Carol explained. “From there it just got worse.”
By this time Lauryn was spending much of her life in hospital, at times on a ventilator in intensive care.
She was taking several medications and further tests revealed she suffered non-convulsive seizures every time she went to sleep.
It was clear she suffered from severe refractory epilepsy, a drug-resistant form of the condition.
‘My mum saved his life’
But it was about to become an even more difficult time for the family.
Only months after he was born, Lauryn’s baby brother Ryan also needed emergency treatment and ended up in the same hospital in Aberdeen for two weeks in 2019.
His grandparents, who were looking after him while Lauryn was in hospital for six weeks, became worried when he developed a high temperature.
“When we took him to the hospital they moved so fast,” Carol said. “He’d had a urine infection and he actually had sepsis.
“If it wasn’t for my mum I would hate to think what would have happened – my mum definitely saved his life.”
Then we tried cannabis oil…
Lauryn’s condition continued to deteriorate, her weight dropping to just under two stones and she was struggling to eat or drink.
She’d lost her ability to talk, drink, hold objects or crawl and was so heavily medicated she just wanted to sleep and couldn’t hold her head or body up.
Devoted parents Carol and Andy knew they would do anything to help their daughter get better.
Through researching the benefits of cannabis oil, the Aberdeenshire family discovered the NHS had just finished a trial and she was given a prescription for Epidiolex.
But although showing signs of improvement, she still needed to take four other medicines and struggled to cope with two hours of nursery without falling asleep.
‘Cannabis oil has given us our little girl back’
Then her family became aware of a different preparation. A pure whole-plant cannabis oil, trialled in Holland, was proving more effective for children with severe epilepsy.
It still contains the psychoactive compound THC, although a very low dose of 0.2%, which appears to help stop the seizures.
And after meeting with a paediatric neurologist at the Portland Clinic in London, it was agreed that Lauryn could try it.
Since starting to take Bedrolite in February 2020, she’s come on leaps and bounds.
“Lauryn is on a tiny dose of it and she’s now around 95% seizure free,” delighted Carol explains.
“She’s going to school full-time, she’s back going to parties, she’s eating more and we’ve managed to take her off medications and reduced others as well.
“Before she could barely manage school – now she’s back to singing and she’s happy. She’s just enjoying life again.
“It’s just given us our little girl back.”
‘Cannabis oil has been life-changing for our family’
But the cannabis oil comes at a huge cost for the Aberdeenshire family, who pay £550 a month for prescriptions.
They have organised a series of fundraisers to help fund it and just last month Andy, a technical sales coordinator, and 13 friends, played four rounds of golf in one day.
The golfers raised an incredible £11,000 through their efforts – enough to fund almost two years of medication to help Lauryn stay well.
Another inflatable family fun day organised by friends of the couple, who own PJS Events, also raised more than £2,000.
This will give the family a well-deserved break from fundraising allowing them to focus on spending more quality time together.
“People have been way beyond generous and shown us a lot of support and love which has been amazing,” Carol said. “It’s left us lost for words; we’re so grateful.”
She said the Bedrolite cannabis oil, prescribed by the Sapphire Medical Clinic in Stirling, had been “life-changing” not just for Lauryn, but for the whole family.
It’s believed to be the only clinic in the UK allowed to prescribe pure CBD oil privately to children with neurological conditions.
The mum-of-two said: “For Ryan, he’s now got his sister who had just slept all day, or who was in hospital and he never saw her.
“He now has his big sister who he plays with. They’ve got a lovely relationship.”
If you would like to support the family, the GoFundMe fundraiser is still open and you can find it here.
You can also follow Lauryn’s journey on her Facebook page Little Lauryn.
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