A mum who gave birth to premature twins is travelling thousands of miles to get them more of the specialist treatment they need.
And Ashleigh Bucknall, whose twin sons Ellis and Jesse have faced a series of challenges in their short lives, said the valley community where they live has played a huge part in supporting the family through some difficult times.
The mum gave birth to twin brothers in April 2019, after undergoing an emergency caesarean at 28 weeks.
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Ashleigh and husband Daryl faced an anxious 12 weeks while their sons remained in natal intensive care, where they had to be treated for a series of conditions including bleeds to the brain and to the lungs, experienced jaundice, needed blood transfusions, had lumbar punctures, collapsed lungs and sepsis episodes.
There was more to follow. At four weeks, Ellis was diagnosed with Prader-Willi Syndrome. Two weeks later, so was brother Jesse.
"It took me a long time to talk about it," said Ashleigh, a social worker with Blaenau Gwent Council.
"Talking about it made it real. It was difficult to accept in the early days.
"But as soon as I started speaking openly about it with family and friends, their response was like a weight off my shoulders".
The rare genetic condition which causes a wide range of physical symptoms and behavioural challenges, including restricted growth, hypotonia - or weak muscles causing floppiness - and issues that could lead to potential weight gain.
There is limited help available for those with Prader-Willi Syndrome on the NHS, but for intense specialist treatment the family have looked to America.
"The boys will three in April, and they can't walk yet, although they are trying - they are very determined. They will walk aided, on something they can grip their hands on, but that has only started happening since Christmas.
"The low muscle tone means a simple task can be ten times harder for them. We have looked at therapy in the UK, and the NHS has been fantastic, but there is just not enough available".
Some family research identified the NAPA Centre in Boston, which provides individualised therapy for infants, toddlers, and children with a range of conditions.
The family visited the centre for the first time last December, returning home on Christmas day, 2021.
Ashleigh said the results have been marked.
"The centre try to help each child with learning different pathways. They can help with getting children to use muscles they do not usually use," she said.
"Their treatment will not work for every child, but we felt it was beneficial for Ellis and Jesse. They had three weeks intensive treatment, three hours a day. It was difficult and they did cry on occasions. I did wonder, 'am I doing the right thing here'?
"But the more they were doing it, the more they progressed. They were being pushed to points they had not been pushed to before. They could not stand before, but now they can do so independently for a few seconds. They have been a lot more confident in their own ability. It's little progress, but it is progress".
The treatment doesn't come cheap. But the Treharris community where they lived has pulled together to make sure the twin boys get the treatment they need.
A Go Fund Me page reached their initial £30,000 target, which enabled the parents and children to make their first visit to the centre last year, as well as other private therapies in the UK.
The fund-raising continues. Amongst those contributing are Ashleigh's Blaenau Gwent Council colleague Vikki Davies, an ultra marathon runner who later this year will tackle a 34 mile ultra marathon and a multi event challenge over three days to help raise money for the boys.
Ashleigh said: "We have had to use all our savings and have had support off my fantastic parents.
"But it's all a lot of money, and we've been very lucky with where we live. All sorts of different people and different companies have come forward to help us in different ways; offering items for raffle, the local rugby clubs have been doing stuff for us.
"We've been so lucky in that respect, and its given me confidence that my children will be growing up in that sort of community, and accepted in that community, and when the time comes to go to school they will be accepted.
"That is a valley community - compare that to what it might be like in a city. I am proud to come from here".
To donate to the family's GoFundMe page visit here
