Blackpool mum appealing for support for epileptic daughter with cerebral palsy who has up to 150 fits a day

Single mum Courtney Howarth is finding it hard to bulk-buy daily essentials like nappies, wet wipes and hand gel, which are vital for keeping her daughter Esmé out of hospital.

Esmé has a severe type of epilepsy, as well as cerebral palsy, which affects her ability to move and maintain balance and posture. She also has encephalitis - a rare and life-threatening condition in which the brain becomes inflamed.

Now Courtney is appealing for more help for families with seriously unwell children, including priority delivery slots for online shopping, and perhaps a type of ID card or number to prove their vulnerability to retail workers.

The 23-year-old said: "The risk of infection is 10 times higher for Esmé. If she contracted the coronavirus, she would die.

"I've nearly lost her multiple times in the past, so I just can't risk anything."

Esmé, who is also immobile, incontinent, visually impaired and non-verbal, was just 10-months-old when she fell unconscious a few days before Christmas and was rushed to Blackpool Victoria Hospital.

She was then transferred to Manchester where she was incubated for six weeks.

But despite a myriad of tests and Skype conferences with experts from across the globe, the full extent of her illness is still unknown, with Courtney adding: "She doesn't have a full-term diagnosis, so she is quite a mysterious child."

Treatments include 16 to 18 types of medication a day, and spinal X-rays every six months in preparation for surgery next year.

Courtney must also maintain clinical hygiene levels at all times to prevent infections.

"You can't be too cautious - the simplest of chest infections could knock her for six," she said.

"She's previously been in hospital for more than a month, and nine times out of ten she needs oxygen because she has respiratory problems.

"Esmé's usually admitted to hospital at least once a month."

She also requires nappies and incontinence pads.

"I use twice as many when she's had a bad seizure," said Courtney.

"She's had fits so bad that her incontinence pads have been full of urine."

But the mum-of-one added: "I'm struggling to get hold of essential items. There's nothing about and prices have rocketed, even on eBay and Amazon. Products often cost twice as much.

"We can only use a particular brand of wipes because Esmé is sensitive. I can't afford to waste money on others - it's money I haven't got."

Courtney says she normally bulk-buys months' worth of items at a time - but now she cannot get a delivery slot or leave the house for weeks, and can only buy a couple of packets of baby wipes at a time due to shopping restrictions.

She added: "That will last me a day and a half, and if I've got to wait days to get out again, it's potentially putting my child's life at risk.

"I'm not bulk-buying to take the mick. I genuinely need this stuff.

"As a single parent, I've no help in this house. I don't have a lot of family. If I run out of electricity, for example, I run out. Last week, I had just 20p on the electric.

"I don't have anyone to help me with simple things like shopping for milk and bread. But I still have to look after myself because I can't afford to slip when I have a child with complex needs.

"And if I take Esmé out and she gets the virus, she will die."

Courtney says her mental health is now crumbling.

"I understand that the world is in crisis but when you have a child with complex needs, everything is heightened. The worry is ten times as much," she said.

"I have anxiety about whether she is going to come out in a rash or end up in hospital, which is the worst place for her right now.

"But if I'm stressed, and she picks up on it and becomes stressed herself, it could bring on seizures."

Life under lock-down is also putting Esmé's well-being at risk in other ways.

Courtney does not have the right type of bath to wash her safely and normally sends her daughter to respite for a shower. But now she must give her a bed wash.

She says she is fighting to get another house and has never received any professional help, as no company exists that is suitable for Esmé's needs.

"It would be a death trap if I tried to give her a bath or shower at home because I can't physically hold her on my own, so she could break her elbows," she said.

But she adds that when she has tried to call helplines for support, she is left waiting on the phone for around three hours.

"I can't wait that long - Esmé could stop breathing in that time," Courtney said.

"I think there needs to be more information out there about support available for people like us, not just the elderly.

"I know it's hard for everyone. We're all suffering. But I feel we've got it that little bit harder.

"Families like mine are being pushed to the back and there's not enough awareness about how children like Esmé are suffering."

Booths however says it is looking for solutions to the wider issue, and has offered to deliver shopping to Courtney's home.

Sainsbury’s say they are stepping up both their home delivery and Click and Collect services so that they can continue to serve as many households with vulnerable people as possible.

An ASDA spokesman said: “In addition to working around the clock to keep our shelves stocked and deliveries moving, we are now able to use data provided by the Government to help those people who have been identified as highly vulnerable get what they need and [ensure they] are protected from Covid-19.”

Andrew Opie, the British Retail Consortium’s director of food, said: “Retailers are working with the Government to identify and support elderly, vulnerable and disabled customers. Many are encouraging those who are able to shop in-store to do so.

"Everyone should consider vulnerable neighbours they can support.”