By ITV News Multimedia Producer Narbeh Minassian
Jesse and Ellis, who were born 12 weeks prematurely in April 2019, were treated for consecutive cases of bleeds to the brain, collapsed lungs and respiratory distress, among others.
And after weeks of uncertainty at an intensive care unit 50 miles away from their Welsh village home of Treharris, the boys would be discharged from hospital with one diagnosis they could not leave behind.
Test results confirmed they have a rare genetic condition, known as Prader-Willi Syndrome, which decreases muscle tone and can leave babies feeling floppy.
For months, Jesse and Ellis could not sit up without physical support and didn’t even have the muscle growth to cry.
But their progress has been encouraging and, thanks to their small, supportive village community, their fundraising page quickly gathered momentum, with £10,000 donated in the first 24 hours.
Now with more than £30,000, mum Ashleigh Bucknall, 30, and husband Daryl, 32, are spending Christmas with their boys able to sit, smile and say ‘mum’ and ‘dad.’
“It was amazing, we initially wanted to raise £1,000 just to pay for physiotherapy sessions up to Christmas,” she told ITV News.
“It makes me so proud of where I’m from, we are just a small village here but I think everyone is now more aware of their condition and will be willing to help when they go to school.
“I’m now a lot more confident that my boys are my boys, they are my Jesse and Ellis before any diagnosis.”
The money means they have enough to pay for private sessions for the next year and even a three-week course of revolutionary therapy with specialists in the United States next December.
Ashleigh hopes they may even be able to take their first steps by next Christmas.
“We are doing everything we can and I am really confident they will walk, but it will take time and a lot of work,” she said.
Standing on their own two feet would represent phenomenal progress, given how fragile their lives were in April 2019, when they were born a full three months before their due date, weighing just a gram each.
Ashleigh was not prepared for what lied ahead – 12 weeks in neonatal intensive care units – but it was the first few hours that frightened her the most.
“You become naïve. I thought they were just born early but they will just grow as normal,” she said.
Doctors struggled to find Ellis’ veins while Jesse, who was delivered through an emergency C-section, suffered a pulmonary haemorrhage and collapsed lungs within his first 32 hours.
“We didn’t know if he would make it that night,” said Ashleigh, who managed to hold each baby for the first time just before Jesse’s condition began to deteriorate.
“You live hour by hour, but hours feel like days, days feel like weeks and weeks feel like years.
“The constant sound of beeping and the alarms, the constant noises were horrible.”
Ashleigh was left with no choice but to give nurses permission to perform a lumbar puncture on the boys less than 36 hours after birth, meaning both were injected in the spine.
The boys’ health fluctuated between six blood transfusions, bleeding in the brain, jaundice, two serious sepsis episodes – which can damage multiple organs – and prolonged periods of ventilation.
“Every time there was good news, bad news would quickly follow. And the amount of times I felt my world shatter I can’t even count,” she said.
The darkest days came in the first seven weeks, when the babies were transferred to a hospital 50 miles away in Swansea because their local unit was full.
Ashleigh stayed by the babies’ side throughout, returning only three times in total – one of which was to attend her grandfather’s funeral, who Ellis was named after with his middle name, John.
Daryl, an underground coal miner, went back to work but would return soon enough when doctors delivered some more bad news.
“The doctors said Ellis wasn’t responding in the way he should be, they said it’s like he’s lost the motivation to breathe,” Ashleigh said.
“In your head you are just thinking he is just tired, there is nothing wrong with him. You don’t want to hear any of the bad stuff… we already had so much trauma.
“He was tested and two weeks later we got the results that it was a genetic disorder. At this point Jesse didn’t have the diagnosis but they tested him as well.
“Our world collapsed once, and then all over again two weeks later with Jesse’s results.”
The months that followed saw the boys in and out of hospital, sometimes for routine sessions and check-ups and other times for urgent attention – they were diagnosed with pneumonia three times.
But their improvement was steady and they have remained “happy, determined little boys,” particularly after they began private therapy sessions to build strength and improve mobility.
Ashleigh said: “Before that therapy, if I sat the boys up I would need to be right behind them because they can’t do it for two seconds.
“But now I could walk away and take a photo and they can play, their strength has improved.”
Earlier in December, Ashleigh was delighted to see Ellis’ first bum shuffle as he excitedly watched Shaun the Sheep on TV.
“I went through a stage in the neonatal unit when I couldn’t go a day without crying, but these boys are amazing,” Ashleigh said.
“We walk into their bedroom and they smile and ask to be picked up and it’s an amazing feeling.
“Sometimes they ask to be picked up at the same time and it’s hard to decide who to pick up first!”
The family has years of careful and consistent treatment ahead to mitigate the effects of Prader-Willi Syndrome.
Jesse and Ellis wear specially-made helmets to combat a condition that developed as a result of the disorder – brachycephaly, or ‘flat head syndrome.’
While the NHS does not cover treatment for all possible effects, the generosity of neighbours, friends and online supporters means they have the funds for private sessions to fill 2021 and enough left over for specialist treatment in Boston, USA starting in December next year.
As fate would have it, Jesse and Ellis are set to return home from the States on December 24 – meaning there is a real chance the boys may be strong enough to walk over to their presents on Christmas Day.
“Our hope is that Ellis and Jess will be walking next Christmas, it would mean the absolute world to us,” Ashleigh said.
“Nonetheless, they are beautiful, happy little boys who take everything in their stride and we are so proud of them.
“We are confident in their own time they will reach this goal.”
To donate, click here.
What is Prader-Willi syndrome?
According to the NHS, Prader-Willi syndrome is a rare genetic condition that causes a wide range of physical symptoms, learning difficulties and behavioural problems. It’s usually noticed shortly after birth.
The symptoms include:
an excessive appetite and overeating
restricted growth (children are much shorter than average)
floppiness caused by weak muscles (hypotonia)
immature sexual development
speech and language difficulties and mobility issues