A MUM has said just walking to the front door with her little girl is ‘nerve wracking’ due to a rare condition.
Little Kelsey Quant suffers from chronic cold urticaria meaning that she can’t be outside for more than a few minutes without breaking out in painful hives and her throat swelling.
The schoolgirl has also been in tears recently, watching sisters Ella, 15, Leah, 13, and Freya, eight, play out in the snow.
Kimberley, from Exeter, Devon, said: “She could die. With the current statistics, only two percent of people with the condition get anaphylaxis but due to her getting throat swelling, the specialist thinks she’ll be one of the unlucky ones.
“At this time of year, there’s nothing I can do. It’s way too cold for her to go out.
“We keep her home from school because it’s too cold for her to go in and it’s too much for the school without disrupting other pupils.”
Even though Kelsey wears thermal clothing, hats, scarves and gloves, it’s not enough.
“Even walking from the front door to the car door which is about 20 feet is nerve wracking because she will blister on her face or whatever body part is on show. I wrap her up and run.
“We’ve considered moving out of the UK. Every year we take a holiday abroad for a week and we don’t need to give her any medication and she doesn’t react. I’d love to move to Cyprus,” Kimberley added.
Despite this, the mum is worried that her daughter won’t get the care she needs if she moves out of the UK.
The family said they ‘dread’ this time of year, adding that they are spending over £18-a-day heating their home.
“I have to keep the heating on 26 degrees 24/7.
“It’s something we have to do, we can’t let her suffer. It’s either that or have a very ill child.”
Kelsy has been prescribed an epipen in case she goes into anaphylactic shock as well as taking antihistamines and medication to open her airways.
The youngster first started to show signs of the condition when she was just a day old.
Before she turned two – she had been in and out of the hospital 52 times.
Nurse Kimberley says doctors were left baffled by what could be causing the reaction – but they finally got a diagnosis when Kelsey was three after a nurse noticed she started to react after nipping outside to the hospital play area.
Kimberley said: “She gets a systemic rash, blisters and welts all over her body and it affected her chest. Her hives go a scalded red colour, her cheeks go red like they’ve been slapped then she starts blistering.
“She gets it from head to toe and there’s no hiding it. We thought it would get better and it could have been a new-born thing.
“She was reacting to something and we didn’t know what. It’s been a bit of a nightmare.
“Something that sticks with us to this day is when we tell people she’s allergic to the cold, you can tell by their faces that they want to laugh. That’s the exact reaction that we had. It sounds stupid.”
Kimberley said she feels as though her daughter is missing out, especially with the snow that the UK has experienced recently.
The family are sharing Kelsey’s story to raise awareness of the condition as they say the biggest battle is convincing people that its real.
Kimberley said: “We went to Cornwall last summer and she looked like she had been scalded on her body because of a reaction.
“People were shouting at me that we should have put sun cream on her. We get abuse all the time from people who just assume that we haven’t covered her in suncream.
“People can be so ignorant to it. That’s the worst thing about it. I have a blue badge to park close to the school door to get her straight in the warm. I’ve had s*** from people for that.
“That’s the nature of it not being known about much.”
/ 3 days ago
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