A fundraiser has been launched to help give ‘the best life’ to a Broadstairs five-year-old who lives with disabilities including frequent seizures so severe she can go into cardiac arrest within seconds.
Bethany Richards-Allen, who will be six in January, has life-limiting, critical needs which mean she must have 24/7 care from a nurse and complex carer as well as from parents Michelle Richards and Will Allen.
The youngster has one of the most severe cases of epilepsy in the south-east, suffers respiratory disease and is non-verbal, non-mobile, sight impaired and has a gastro tube in her belly for food and her 10 daily medications.
Despite the huge challenges every day brings, Michelle says Bethany always has “a massive smile on her face” and loves painting and being busy.
She said: “She has a funny little personality and is always laughing at anything inappropriate or silly. She has been watching Home Alone which she finds hilarious. She always has a massive smile on her face and loves being busy and doing stuff even though she is so delicate physically.
“Her favourite thing is painting and you can tell that’s what she wants to do by her smile but she does need help to do everything.”
Bethany had to be resuscitated when she was born at QEQM Hospital and suffered seizures that stopped her breathing and heart. She then underwent life-saving surgery on her bowel at St Thomas’ Hospital followed by six weeks in intensive care and spent almost two years in the neurological ward and intensive care at Evelina Children’s Hospital.
The little one had seizures daily, requiring resuscitation each time and suffered cardiac arrests where CPR was required. Sometimes up to 10 doctors, consultants and anaesthetists were needed to revive her. In one week Bethany suffered 42 life threatening seizures. She also had 14 operations over two years in an attempt to stabilise her.
Bethany came home a few days after her second birthday, just before covid hit, as at that point she had become resistant to some of her treatments and the risk of catching viruses in hospital was so severe it could have been fatal.
Caring for Bethany meant Michelle had to give up her full-time teaching job and Will, also a teacher, went part-time although issues with nursing staff shortages means he often can only work a day or two in the week as he needs to be at home.
The couple, who have two other little ones aged two and five-months, need to find finances for frequent hospital trips but also for specialist medical items and huge electricity bills due to Bethany’s equipment running day and night. They have already had to take out loans for home adaptions as a Disabled Facility Grant did not cover the entire cost.
Michelle, who is Bethany’s registered carer, said: “I had to give up my job as we weren’t allowed the [care] package unless I was there all the time. When covid hit it was good for us for staffing as they weren’t doing other things. But the last couple of years, where it has been going back to normal, we have been short-staffed a lot with people being off ill.
“Bethany has to have two, fully trained people all the time which means me and Will both have to be there if staff are off.”
In January 2022 Bethany had a full cardiac arrest and Michelle and Will had to give CPR until the ambulance arrived. She was put on life support and transferred to St George’s Hospital.
Since then Bethany has been admitted to intensive care every three or four months as her body is unable to cope if she catches a cold or virus and it becomes life-threatening. She has had six intensive care admissions in the past two years requiring life support.
This means it is critical there is always someone to watch Bethany and be able to see her face as she could stop breathing at any moment and the seconds following that, before the monitors even sound, are crucial to making sure her airways are unblocked and lungs are drained.
Michelle said: “If she stops breathing we have got just seconds to get her into position and stimulate her to breath before we have to resuscitate her. It could be just 10 seconds and she will be in cardiac arrest.
“With intensive care every three months Bethany is critical and it is always touch and go, so Will can’t just go off to work.
“If we haven’t got her staff it also means we need to be up with her all day and all night and still be on form the next day which is really difficult.
“We needed adaptations on the house but the grant didn’t cover all of it and Bethany needs equipment. Lots of that equipment is provided and paid for but not all of it and anything medical is ridiculously expensive. Even the [specialist] pram they told us to buy was £8,000 – which was funded- but the rain cover was several hundreds of pounds.
“Not all the equipment Bethany would benefit from is provided, like physio equipment, and with Will not being able to work so much we are in debt and actually just drowning and Bethany is missing out on all the things she needs.
“We are quite private but we have got to the point where Bethany is missing out on so many things and we need to ask for help.
“It would just be nice to finish the extension, get her physio equipment and to be able to do nice things together.
“I want Bethany to be able to experience good things in the world and not think it is all bad things and pain. I want her to experience things that enhance her life because she deserves it.”
Bethany’s aunts Shara and Charmain have set up a fundraiser in a bid to help.
Shara said: “The main issue is they have agency staff, two for 24 hours as nurses have to be with Bethany at all times, but quite often staff call in sick and for Christmas and New Year some gaps are not yet filled. Michelle and Will then have to cover, they are now medically trained, going all through the night and then swapping over.
“The mental, financial and physical impact is on them all the time and with it coming up to Christmas it is so difficult. As a family we do our best to help.
“Bethany needs lots of equipment, things like a specialist wheelchair and as she gets bigger her problems change, so at the moment she has to spend a lot of time lying down.
“The chair is around £1,000 but even a footmuff for it is then another £600-£700, obscene amounts of money for things because they are specialised.
“The electricity bill is really high and Will and Michelle can’t get any help for some reason, they applied but it was refused although we don’t know why.”
The hope is the fundraiser could also help with days out and holidays, something that is extremely difficult as Bethany has to have the two nursing staff with her at all times which, when it is possible to get them, incurs extra costs.
Shara said: “The only holiday they have had in five years is when they went to Demelza in Sittingbourne. That’s as far as they can go financially and also because they have to get the nurses to be with them.
“Bethany loves to interact, loves arts and crafts and loves music. Her music teacher at school, Tom, plays guitar and she beams the whole time.
“She likes princess things, having her nails painted and being a girly girl. You can hear her chuckling when she is having a good day, she wants to interact with everyone. Even with everything she has been through she is such a happy girl.
“We just want to give her the best life in the time she has left because we don’t know how long that will be.”