Stubbington family launches fundraiser for sensory room to help daughter with two rare conditions

WHEN little Doris Bufton was born six weeks early, her parents were warned of the potential delays in development she might have.
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However, after months of uncertainty she was diagnosed with two extremely rare, life-limiting conditions which means baby Doris will need lots of extra support.

It is unlikely she will ever be able to talk or go to a mainstream school, and will be seeing specialists throughout her life.

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Mum and dad Alexandra and Kris, from Stubbington, have now launched a fundraising campaign which aims to provide her with a sensory room.

Doris Bufton Picture: Sarah Standing (081020-5139)Doris Bufton Picture: Sarah Standing (081020-5139)
Doris Bufton Picture: Sarah Standing (081020-5139)

This will help to ease Doris’ daily stresses caused by her lissencephaly - or smooth brain - and rare chromosome disorder 17p13.3 deletion.

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Alexandra told The News: ‘It's hard to ask for help for anything, you feel like as a parent you should be doing it yourself.

‘We don’t really know what we’re dealing with or what the future holds. Not knowing how long we're going to have her is one of the biggest things. She’s so lovely, she’s so smiley and just a happy baby.

Alexandra and Kris Bufton with their daughter Doris Picture: Sarah Standing (081020-5128)Alexandra and Kris Bufton with their daughter Doris Picture: Sarah Standing (081020-5128)
Alexandra and Kris Bufton with their daughter Doris Picture: Sarah Standing (081020-5128)
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‘At the moment I’m just trying to be proactive and do everything we can possibly do to help her in the future.’

Doris, who is just over a year old, was born by induction at 34 weeks weighing just 4lb 7oz after Alexandra’s waters broke at 29 weeks due to an infection.

With two older daughters, Alexandra and Kris were concerned when Doris wasn’t meeting the usual milestones but tried not to panic as this is not unusual with premature babies.

However, at seven months old Doris became unwell with a temperature and after spending time in hospital overnight she received a preliminary diagnosis of cerebral palsy.

Doris Bufton with her sisters Poppy Bufton, four, left, and Amelia Bufton-Cheal, nine 
Picture: Sarah Standing (081020-5150)Doris Bufton with her sisters Poppy Bufton, four, left, and Amelia Bufton-Cheal, nine 
Picture: Sarah Standing (081020-5150)
Doris Bufton with her sisters Poppy Bufton, four, left, and Amelia Bufton-Cheal, nine Picture: Sarah Standing (081020-5150)
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Doctors later discovered she had the two rare conditions lissencephaly and 17p13.3 deletion. For both cases, the chance of a child being born with the condition is one in 100,000.

Lissencephaly means Doris’ brain is underdeveloped, she is much smaller than she should be and has various issues including difficulty sitting up, risk of seizures and more.

Alexandra, 31, said: ‘I want other people to be able to understand it. It’s quite life-limiting and a lot of children don’t live past 10 which is quite a shock.

Doris Bufton Picture: Sarah Standing (081020-5135)Doris Bufton Picture: Sarah Standing (081020-5135)
Doris Bufton Picture: Sarah Standing (081020-5135)

‘I’m just focusing on one day at a time. Having the other two is what has kept me going because they have to have normal lives as much as possible.

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‘It’s just trying to stay strong with all three of the girls. Instead of stressing about everything, I just think she’s not in pain and she’s happy.’

Older sisters Amelia, nine, and four-year-old Poppy adore little Doris, and have started sharing a bedroom with each other to create space for the sensory room.

‘It’s just to help her with her treatment and she’d have somewhere to be calm,’ Alexandra said.

‘Everything for her is massively heightened and it causes constant stress and it’s hard for her to just mellow out so that’s what we’re hoping this room can do for her.’

Doris Bufton Picture: Sarah Standing (081020-5145)Doris Bufton Picture: Sarah Standing (081020-5145)
Doris Bufton Picture: Sarah Standing (081020-5145)
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The family hopes to raise £6,000, and they have already managed to bring in more than £1,400 towards the total.

Visit uk.gofundme.com/f/dinky-doris-sensory-save to donate towards the family’s fund.

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