Staffordshire girl’s rare genetic illness means she could die if excited
Three-year-old girl suffers with rare gene abnormality which means she could die if she gets overexcited after she was hospitalised while having too much fun at Peppa Pig World
- Lola Sheldon, 3, from Staffordshire suffers from a rare genetic abnormality
- If she becomes too excited she can suffer a potentially fatal epileptic seizure
- Lola’s mother, father and sister have all tested negative for the defective gene
- She spent several days in hospital following a trip to Peppa Pig World last year
A toddler with a rare condition which means that she could die if she gets overexcited was nearly killed after having too much fun at Peppa Pig World.
Three-year-old Lola Sheldon suffers from a rare genetic abnormality which has left her with epilepsy and delays in her development.
Her parents Carly Whing and Luke Sheldon, both 27, have to be careful to not let their little girl get too excited as it can trigger life-threatening seizures.
Carly Whing, pictured with her partner Luke Sheldon, right, and their two children Carly, three and Brooke, 10, at Peppa Pig World in Hampshire is the full time carer for her younger daughter who has a rare genetic disease
Lola Sheldon, pictured, has a rare form of epilepsy that stunts her development and causes seizures if she is too stimulated
A frightening reminder for the family came when Lola was left hospitalised after having too much fun at Peppa Pig World to celebrate her third birthday.
She suffered hours of epileptic fits and had to spend several days in hospital after a visit to the children’s theme park in Romsey, Hampshire, in August last year.
On another occasion Lola was left in intensive care after suffering a seizure meaning her parents have to try and manage her excitement and keep her as calm as possible.
Ms Whing, who is her daughter’s full time carer said: ‘We’ve come to terms with the fact that Lola’s trigger is having too much fun.
‘But it is really hard having to intervene when she’s enjoying herself.
‘It’s just heartbreaking to see your daughter having a great time only to worry she will end up in hospital if she gets too excited.
‘Her seizures tend to happen when there’s a lot going on around her. She overstimulates her brain from having too much fun and then she has a seizure.
‘We took her to Peppa Pig World for her birthday last year and she had a great day going on all of the rides but then we went home and she had a really bad seizure.
‘It’s very scary. We can be sat in the emergency department for hours whilst they put loads of drugs in her to try and make the seizures stop.
‘There’s always a chance that she could stop breathing when she is fitting and that she could die from the seizures. It’s really quite frightening.
‘If she goes to a children’s party I have to monitor her closely and if I think she is getting too excited I have to take her out of the room.’
Lola was diagnosed with the rare gene abnormality when she was just four months old and suffered a seizure in the middle of the night in December 2017.
Ms Whing was in bed next to Lola’s moses basket when she woke up to find her baby girl shaking uncontrollably as she experienced her first seizure.
The terrified parents rushed Lola to hospital where she underwent blood tests, an MRI scan, a CAT scan and a lumbar puncture.
Ms Whing, who lives in Lichfield, Staffordshire, added: ‘The first time she had a seizure, it was really frightening.
Ms Whing, who is Carly’s full time carer, said the family has to be especially careful with the three-year-old because of the severity of her condition
‘I just woke up to the Moses basket shaking. I had no idea what was happening, I was just screaming and bouncing around the bedroom, not knowing what to do.
‘I could hear this repetitive movement of her arms against the side of the moses basket so I looked over and she was just shaking and fitting. It was just awful.
‘Me and her dad were petrified. The ambulance came, the paramedics swooped her up and said they needed to take her right away.
‘Back then, I didn’t really know anything about epilepsy. I remember worrying that she’d banged her head or something.
‘But she was only four months old so I’d been with her the entire time and she’d had no accidents. I was really confused and scared.
‘The doctors knew it was an epileptic fit but they couldn’t understand why and then they had to do all these tests to find out it was from a gene abnormality.’
The tests revealed that Lola has a rare gene abnormality that can result in many different conditions such as epilepsy, autism, OCD and ADHD.
Doctors have confirmed that Lola has epilepsy as well as showing signs of delay in her development and she will be on medication for the rest of her life.
The condition is triggered when she is having a lot of fun and getting too excited can result in her suffering a seizure so dangerous that it could kill her.
Her older sister Brooke, 10, has already had to learn to be more calm around her little sibling in order to keep her safe.
Ms Whing said: ‘Lola’s dad and I have both had blood tests done since her diagnosis but the gene abnormality turns out to not have come from either of us, it just happened.
‘Brooke hasn’t got the gene abnormality either – she’s never ill. They say you always have one healthy child and one not as healthy and that’s just hit us tenfold.
Ms Whing said neither she or Carly’s father have the genetic abnormality. They have also tested Carly’s sister Brooke, right, who also does not have the defective gene
‘It’s very hard. Lola has four cousins, and if they come to mine, it’s a real shame as I have to tell them to keep calm.
‘She doesn’t like shouting or anything like that, it really upsets her.
‘It’s hard because my daughter Brooke has had to readjust her life as well – she’s quite calm now for a ten year old, she can’t be running around and shouting.
‘She helps a lot with Lola too, she’s amazing and really great with her.
‘I have a bag permanently packed waiting to go to hospital at any moment.
‘You can never fully relax but we have become used to Lola’s condition. It has become a way of life.’
A GoFundme campaign has been set up by friends to help raise money for lifesaving epilepsy equipment for Lola.
