A nine-year-old schoolgirl has been left dreading Britain’s cycle of heatwaves and rain showers this summer – because she’s allergic to the WEATHER.
Little Bethany Bell was born with a rare chromosone disorder known as 1q4 deletion, which means her body is unable to moderate her core temperature.
It means the youngster turns limp and suffers seizures when exposed to temperatures above 24C (75.2F), and goes blue in the cold.
Bethany also suffers sensory-processing disorder, which means windy or rainy weather can be agony for her.
Parents Charlotte, 35, and Stewart, 36, both teaching assistants for special needs children, constantly monitor her whenever she leaves her home in Nottingham.
Mum-of-two Charlotte said: “The condition makes it very hard for us to know when we can or can’t take her out.
“Obviously we want to be able to take Bethany out, but the weather conditions have to be absolutely perfect and we have to take a lot of equipment out with us.
“The perfect kind of weather is an overcast day but still and dry and not too muggy. There aren’t many days like that because it’s either hot or its cold and raining.
“When it gets too hot for her, her brain isn’t capable of cooling her down in the way that mine or yours does.
“That means that she overheats and literally just shuts down, like you’d expect a computer to.
“She goes completely limp and all floppy, and just loses consciousness.
“If she’s left in that state for too long, she can suffer from seizures.
“Stewart and I have to take a cooling blanket out with us, as well as cooling sprays and a lot of water.
“When it gets colder, her body isn’t able to warm up at all, which means she starts turning blue, goes hard and struggles to move.
“Because of that, going from a warm room into the cold outside is very difficult, and vice versa.
“As parents we always have to be wary – we’ve been learning that layers is the key.
“She also has sensory-processing disorder, and that means that she’s oversensitive to wind and rain.
“When she’s exposed to the wind, she has no idea what is going on and just bursts into tears.
“She can’t express herself properly, so the only way she can show us that she’s suffering is by crying or thrashing around.
“When she was younger she even struggled to have showers.
“It’s a constant puzzle for us.
“We wanted to go out to Chatsworth House a few weeks ago, and had a look at the weather and weren’t too sure, so we just didn’t risk it.
“Thankfully we’ve recently been donated a special buggy from charity New Life, which has helped.
“The sheepskin lining means we will be able to keep her warm in the winter, and the cover means she won’t get too wet and cool when it is raining.
“But dealing with it is a constant problem.”
Before Bethany was born, Charlotte and Stewart were told she had hydrocephalus – a build up of fluid on the brain – and would have a 50 per cent chance of being disabled.
Two years and four operations to remove the fluid later, doctors at the Queen’s Medical Centre in Nottingham found that she had 1q4 deletion.
The rare condition – which was only discovered in 1976 and is only believed to affect around 100 people in the world – means that she has some genetic material missing.
Bethany’s features include epilepsy, severely impaired sight, abnormal muscle tone, learning difficulties, moderate hearing loss and delays in her development.
The youngster, who attends Oakfield School, also suffers from microcephaly, which causes her head to be smaller than average, and has to be fed through a tube directly to her stomach.
Charlotte added: “She’s had an incredibly tough life, the poor thing.
“The illness was caused by some sort of gene mutation, either in my eggs or Stewart’s sperm.
“Our other daughter was born with no problems whatsoever, and neither myself nor Stewart are carriers.
“It’s incredibly rare that it happens, and a lot of our information has been gleaned from people on a special Facebook group for sufferers.
“In fact, it’s so rare that they don’t even have a proper name for it yet, so 1q4 deletion is what we have to go with.
“Only four weeks after she was born, we could only see the whites of her eyes, and she fell unconscious.
“She had to have an operation to remove the fluid from her brain, and since then she has had to have two shunts installed to drain the fluid to her stomach.
“We’re hopeful that people will glean more of an understanding of it, and how we can help Bethany.”
New Life has been raising money for Bethany’s new buggy by placing charity boxes in Co-Op stores.
Sheila Brown, who runs the charity, said: “It has been a fantastic partnership with a fantastic organisation.
“Central England Co-operative colleagues in stores across 16 counties have put so much effort into events to raise money for Newlife.
“That really shows, and has helped hundreds of families who might otherwise have had to struggle on without the specialist equipment they needed.”
Central England Co-operative chief executive Martyn Cheadle added: “For us, it’s been a fantastic five years and we are so proud to have been able to raise £1.5million.
“However, the important part of the entire partnership has been that we have been able to give all of the money back to support people in the local communities that we serve.”
