Preston mum appealing for support for terminally ill daughter with severe form of epilepsy
A Preston mum fears her terminally ill four-year-old daughter could die of an infection as she struggles to get access to essential items for her care.
Jenna and Matthew Heary-Botham say they are finding it hard to bulk-buy daily essentials like hand gel, sanitary gloves, hygiene wipes, special nappies, incontinence pads and Calpol, which are vital for preventing their daughter Olivia’s seizures.
Olivia is being tested for Early Myoclonic Encephalopathy (EME), a particularly severe form of epilepsy.
Now mum-of-three Jenna is appealing to supermarkets to offer a special delivery slot for families caring for terminally ill children.
Booths has since stepped in to help Jenna out, but she wants to further highlight the issue, which affects many families.
The 25-year-old, who is a full-time carer to Olivia, said: “These families need this slot to help keep their children alive.
“I can’t not panic. We live in fear of Olivia developing an infection everyday. We’ve got to wrap her up in cotton wool to save her life. If she can’t fight a chest infection, it’s the end of the road.
“She has respiratory problems, is bed-bound and has almost no immune system. It’s shocking how vulnerable she is to Covid-19.”
Olivia’s health issues began when she was just four-weeks-old and they became so bad that she would have more than 100 fits a day.
She is now part of The 100,000 Genomes Project and takes CBD medical cannabis oil, plus six types of medication. Her seizures have since plummeted to around 50 in a week - or even as few as five. Fortunately, the NHS delivers both special dietary food items, syringes and her medication.
But her safety is dependent on a strict hygiene routine.
“If we go near Olivia, we need to be gloved up. If we can’t wash our hands properly and we touch her and pass on the virus, it could bring on seizures,” said Jenna.
“Every time she coughs, her airways have to be suctioned to clear them. So, if she coughs three or four times, I have to wash my hands with sanitiser and change my gloves that many times.”
Olivia also suffers from incontinence and wears nappies designed for eight to 15-year-olds, which need to be changed regularly to avoid causing seizures.
But her mum said: “They’re like gold dust, and have doubled in price. I can only find packs of six in shops. Everything has gone.
“I’ve stayed up until the early hours trying to get a delivery slot but there’s nothing, even for Click and Collect.”
Family and friends are isolating, and Jenna’s brother has been doing their shopping, as it is too risky for her or Matthew to leave the house. But he can only get single packs of items at a time.
The Preston mum adds there is also constant risk of people bringing deadly bugs into the house, which is why she needs to make fewer but bigger purchases online that will last for months.
“I’m frustrated that vulnerable children aren’t being prioritised and I’m speaking up for the other mums in this position,” she said.
“There are selfish people out there who are stock-piling; and people buying online are not taking into account the fact that there are vulnerable people who can’t go out shopping. It’s a worrying time as it is. Imagine that worrying trebling."
Jenna says she has contacted several supermarket chains and Booths has since provided her support. Booths’ customer services manager has offered to shop for Jenna’s needs and personally deliver the items to her - and the chain has now kindly dropped off some items for free.
Sainsbury’s say they are stepping up 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.”