A local charity is running a campaign to buy Christmas presents for ’superhero kids’, those who have a long term illness or who have suffered a tough year. But, as Julie Blackburn discovered when she met three of them, their mums are very definitely superheroes too.

Lynda Davies’ son, Lyidan is just two years old. He sufferers from Dravet Syndrome which is classed as ’a rare and catastrophic’ form of epilepsy.

Lynda keeps suction equipment, an airbag and mask to hand because sometimes Lyidan’s seizures cause him to pause, quite literally, and this can even include him stopping breathing.

’We have a suction machine so we can take out any saliva from the airways but if he’s physically not breathing by himself I have to resuscitate him so I’ve got an airbag and mask to use,’ she explains, adding that he’s only actually turned blue when he’s been hospitalised with a seizure.

Lynda calls this ’lucky’ but when you learn about the care she and husband Thomas have to take with their son it’s obvious there is a lot more than luck involved.

Children with Dravet Syndrome have frequent and prolonged seizures. Lyidan’s longest, when he was just 10 months old, went on for three and a half hours and he ended up in a coma.

Almost anything can trigger a seizure, including being tired, being excited, being hot and being cold.

Lynda says: ’He can’t have a bubble bath: the excitement of being able to play with bubbles in the bath has caused one before and we have to be very careful with the temperature of his bath and how long he’s in it.

’He can switch in seconds from being fine to stopping breathing and turning grey. It is a constant worry.’

Lyidan has currently gone 15 weeks without a seizure, the longest period since they started: prior to this he was in hospital ’at least’ every 12 days.

Lynda says: ’We’re overdue one and that makes the days very long: if you’re looking so closely for a seizure, you’re hypersensitive.’

Dravet’s is not something a child will simply grow out of and Lyidan’s prognosis isn’t good, as Lynda explains: ’It’s for life and it’s likely to get worse.

’From the age of two his development is likely to slow down; he’s likely to develop certain forms of autism; ADHD is a big concern, and his speech and mobility can be affected.’

Dealing with Lyidan’s condition means that a trip to hospital which would leave most mums panic-stricken, is something that Lynda has learned to take in her stride.

She says: ’In A&E they expect to see a mother that’s out of control with worry but then I walk in and I have his epilepsy passport, his seizure plan and I’ve got his blood pressure and how much his oxygen rate has been and his temperature and when he last ate and his medications.

’I’ve got everything they need and then I tell then what drug he needs next.

’I think it takes them all by shock and surprise - they don’t really know how to take it.’

She is also able to administer a drug to Lyidan that is normally only used in hospital. She says: ’Even the ambulance crew don’t feel comfortable administering it so I do that.

’If he goes into a bad seizure the drug goes up his bottom: I have to be careful with it because it can blind you if it gets into your eyes and it burns your skin.

’I have to be able to administer that safely while making sure he’s not around anything he’s going to hurt himself on, whilst being able to check his breathing and monitor his oxygen.

’If his oxygen goes down I need to be able to suction out anything that’s blocking his airways then I have to be able to seal the mask while holding his bottom, give him mouth to mouth and call for help at the same time - it’s a bit of a juggling act.’

One of the hardest aspects of dealing with Lyidan’s illness is how it has affected the lives of Lynda’s other two children, Illieah, seven, and Kynen, five. Taking them on holiday is not a possibility at the moment: Lyidan can’t travel on the boat because he needs to be able to be within about half an hour’s drive of a hospital.

For this reason they can’t even go to the Wildlife Park, as they used to for Kynen’s birthday, because it falls during TT and the roads are closed. Lynda says: ’It’s just little things that you took for granted.’

She adds: ’Little Piece of Hope has nominated Illieah and Kynen for a present from Santa, acknowledging that they have had a difficult year and just giving them something special to look forward to.’

Chloe Rollitt was born with what her mum, Jo, describes as ’a whole array of problems’, as she explains: ’She had a brain injury, she had sepsis and she was given a 50/50 per cent chance and she fought for her survival. We were in hospital for six weeks with her and it was a very testing time for us.’

Now nine years old, the little girl they were told would never suck or swallow, loves pasta, is in mainstream school and recently completed a 150-metre charity swim. When she grows up she wants to be a nurse.

But some of the physical problems have remained. Jo explains: ’She has hemiperasis, or unilateral paresis, which is a weakness of one entire side of the body.

’She has problems on the right hand side with her hand fine motor skills, she can’t do buttons or laces and she’s medicated for epilepsy as well. But she can write and draw and she’s just a normal happy little girl really.

She’s come on in leaps and bounds. She does have help in school, she has a SENCO (special educational needs co-ordinator), and a team of hospital people, including a neurologist at Alder Hey.’

Despite all this Chloe literally became a superhero this summer when she took part in a charity event sponsored by Marvel Comics, dressed as her favourite superhero, Wonder Woman. She completed a 150m swim in Dorney Lake in Windsor then did a 1km run to support her team mate, Tom Mcintyre.

Jo says: ’Chloe decided she wanted to raise some money for sick children in hospital. She aimed to raise £4,000 and we ended up raising £12,780. The money we raised has paid for every single parent bed in the Children’s Ward at Noble’s to be replaced.’

Now Chloe has been nominated as a Little Piece of Hope superhero kid and she’ll be going to one of their Christmas parties.

Jo says: ’It’s been quite a journey really: we’ve just made the most of having her every day and everything that she’d done has just been a bonus.

’Every day’s a battle and we take each day as it comes with her but, considering what she’s been through - what we’ve all been through as a family, she is quite the little superhero.’

Emma Watterson’s youngest daughter, Levi-Rose, who has just had her fifth birthday, has also had problems since birth.

’She was born with a club foot then she had developmental delay and she had real feeding issues. She had horrendous reflux, to the point where she was on 1-2 ounces an hour, and then she’d do funny things with her eyes rolling them into the back of her head and she was referred to neurosurgery in Alder Hey.

’Then she started developing other symptoms: even as a tiny baby you’d pick her up and her joints all felt loose and she started getting bruising for no apparent reason.’

Levi was sent for genetic testing in May 2017 and when the results came back that September, Emma was told that she had Ehler Danlos Syndrome (EDS).

This causes numerous problems: she has severe hypermobility so her joints dislocate easily and she has chronic fatigue, but the most terrifying aspect of the disease is that any of her internal organs can rupture, at any moment and for no apparent reason: just a sneeze could do it.

Emma says: ’When you see her you wouldn’t have a clue there’s anything wrong with her.

’She uses a wheelchair when she gets tired but she’s a little firecracker: she just runs around the place and doesn’t have a care in the world.

’Of all my children, she’s the liveliest.

’But she’s not allowed to get a medium to high heart rate, so when she’s running around you need to stop her, tell her to calm down and have a rest, or it could rupture her heart.â?©

’When she gets really out of breath we have to stop her and check her because it could be a collapsed lung; when she gets bloodshot eyes it could be there’s been an arterial rupture.

’If she says she feels dizzy or her heart’s beating fast you wait and see if that passes and, if it doesn’t, you dial 999.’

Levi has a dizzying number of hospital appointments to attend and Emma lists them: ’Sheffield Northern General Hospital, Manchester Eye Hospital, two clinics in Royal Manchester Children’s Hospital, St Mary’s Hospital and three clinics in Alder Hey - eight clinics in five different hospitals plus all our Isle of Man appointments.’

There have been some real scares, too, during Levi’s short life: Emma remembers an incident which began with her complaining of a pain in her tummy that just got worse.

’As she raced to hospital with her, her hands became icy cold.

Emma says: ’When we got to A&E her heart rate was so high it set the alarms off.

’Her skin was mottled and they were scanning her belly looking for internal bleeding with the surgeons waiting to operate and I thought: "Am I watching her die?"’

In the event what looked like a ruptured organ or meningitis was just a viral infection but something like that hits Levi harder than other children.

There are a number of variations of EDS and she has the vascular form, the one with the lowest life expectancy.

But Emma says: ’I know it’s not going to be as long as most people would like their child to live but I can’t complain: she has a great quality of life.’

â?¢ Little Piece of Hope will be at the Strand Centre on November 21 for late night shopping and for anyone who wishes to drop off a present or a gift donation for a ’Superhero Kid’.