Mum fundraises to keep family afloat as daughter with smooth brain has up to 500 seizures a day and husband has urgent heart surgery

A mum whose daughter has a smooth brain and suffers up to 500 seizures a day, and whose self-employed husband has had urgent heart surgery, says she is forced to fundraise to keep her family afloat.

Alexandra Bufton, 37, from Locks Heath, Hampshire, gave birth to her daughter Doris in 2019, and early on noticed developmental delays, including excessive sleeping and difficulty holding her head up.

In April 2020, after Doris was admitted to hospital with a swollen head and a temperature, doctors diagnosed her with a rare genetic microdeletion and lissencephaly, meaning she has a smooth brain.

Alexandra and her husband Kris, 40, a self-employed builder, were told Doris is unlikely to live beyond 10 and would never be able to sit, walk or talk, with cognitive abilities comparable to a one-year-old.

Now aged six, Doris’s condition has deteriorated – she has hundreds of seizures each day and is under palliative care focused on her quality of life.

The family is also facing added “stress” after Kris was diagnosed with a heart condition and had urgent open heart surgery, prompting them to launch a fundraiser as they “take each day as it comes”.

Alexandra, who has two other children, Amelia, 14, and Poppy, nine, told PA Real Life: “She’s continuously seizing at the moment, she can’t even smile.

“I’m just pretending everything is OK even when it isn’t.

“Kris and I have always said that everything is about a quality of life – we would never keep her alive for our sake.

“It’s always about her, and as long as she’s not in pain and she’s still getting enjoyment out of things, and she’s comfortable and happy, then we will do that for as long as we can, so we’re hopeful.”

When Alexandra was pregnant with Doris in 2019, her waters broke at 29 weeks, but doctors were able to prevent labour until 34 weeks.

Doris was born in September 2019, weighing 3lb 9oz, and at around six months old Alexandra and Kris began to notice developmental delays, such as her struggling to hold her head up and sleeping excessively.

At the time, they assumed this was due to her being born prematurely, and doctors said they would re-evaluate her development at the age of two.

In April 2020, Alexandra took Doris into hospital after she developed a temperature and swelling on the top of her head.

Following several tests, doctors said Doris’s brain was immature and diagnosed her with a rare genetic condition known as a 17p13.3 microdeletion.

This is a rare disorder in which a small part of the genetic material that makes up one of the body’s 46 chromosomes is missing.

She was also diagnosed with lissencephaly, meaning she has a smooth brain.

Alexandra, who was a mobile hairdresser and ran her own cake business at the time, then became Doris’s full-time carer.

She said: “They told us she may not live until two, and it is unlikely she will live until 10.

“So it was all a bit of a shock.”

Doris later began to struggle with feeding and had a gastrostomy tube fitted.

Alexandra and Kris were told she would never be able to sit, walk or talk, and that cognitively she functions at around the level of a one-year-old.

“I don’t think it even sank in for a long time,” Alexandra said.

At age one, in September 2020, Doris was diagnosed with refractory epilepsy, caused by her other conditions.

Initially, she experienced a few seizures per day and was “lively and very smiley”, often playing with her toys with a “massive grin on her face”.

However, in 2021 Doris’s condition deteriorated and the family moved into a bungalow to make day-to-day life more accessible.

Doris has a specialist bath, ceiling-track hoists in her bedroom, bathroom and living room, a bed with padded sides, a wheelchair, a standing frame and specialist chairs.

In May 2025, Doris had a device inserted into her chest to send mild electrical pulses to the brain via the vagus nerve, helping to reduce the frequency, length and severity of seizures associated with drug-resistant epilepsy.

But, despite this, she now has up to 300 to 500 seizures a day and is asleep for around 23 hours a day.

“Now, although we can slow some of her seizures down, and we have rescue medications to bring her out of big ones, we cannot control her seizures at all,” Alexandra said.

“We’re struggling to get her awake and unfortunately, all the seizures are just causing potential brain damage or just making things more difficult for her.”

Doris can no longer smile or hold her head up and has to be hoisted everywhere.

She is now under palliative care, which focuses on managing her quality of life, though she has not yet reached the “end of life” stage of her care.

“We are hoping that we can get another year, or even a couple of years, from her, if her doctors work out the medication well and properly,” Alexandra explained.

Alongside this, Alexandra’s husband Kris has recently discovered he has a heart condition.

Kris first learned he had high blood pressure around 12 years ago, and scans in December 2025 later revealed he had a bicuspid aortic valve, a heart defect in which the aortic valve has two leaflets instead of the usual three.

He underwent further tests and doctors told him he had an aortic aneurysm – a bulge in a weakened section of the aorta – as well as a heart murmur and a leaky valve, meaning he requires a valve replacement.

Kris then had a routine appointment with his surgeon on January 13 2026 and, after more tests and Kris developing chest pains, he had open heart surgery on January 15.

Alexandra said: “It went well although he had mild complications post surgery of a partially collapsed lung resulting in severe pain and needing a chest tube and further drains.

“He is up and down regarding pain and management but hopefully he can come home soon so I can look after him and Doris under one roof as it’s been very difficult splitting my time between Kris and my girls.”

Doctors believe he will need at least six months off work to recover.

“It was a huge shock, he was definitely quite upset and afraid,” Alexandra said.

“It’s the fear that he’s the only one working, because I’m a full-time carer for Doris, I can’t work because of the unpredictability of Doris.

“He’s self-employed so if he doesn’t work, we don’t earn anything.

“I’ve been ringing around cancelling our Sky TV and installing smart meters so we can do our best to not be in debt while he’s off work.”

As a result, Alexandra has set up a GoFundMe to help support the family, and at the time of publication they had raised more than £10,500.

Alexandra said she often finds herself “pretending everything is OK” during difficult times.

“I will only cry on my own in the van, when I’m driving somewhere – I don’t cry in front of people,” she added.

“I wish I could, because I don’t think it’s healthy for my girls, it’s just not something that we’re very good at.

“I think we use humour a lot just to try and survive.

“I think since having Doris, we know nothing’s going to change her, so moping around isn’t going to make it any better so we just try and just get on with it.”

Looking ahead, she said: “I think we’ll just take each day as it comes, because that’s all we can do at the moment.”

To donate to Alexandra’s fundraiser, visit: www.gofundme.com/f/with-heavy-hearts-we-ask-for-help-for-our-family.