A children's nurse is thanking the community for rallying around her five-year old son to raise nearly £10,000 in three days to get him the urgent blood tests he so desperately needs.
Since he was born, Etienne has truly been his parents’ miracle baby, said his proud mother, Hana Durrant-Peart, who is herself a nurse in a children’s ICU department in London.
“There's such a fine line between being a mum and being a nurse,” said Mrs Durrant-Peart, from Boxford.
“I think being a nurse has made it a million times harder for me, because I care for other people’s children that are incredibly sick, then to go through it with my own child is so painful and so frightening.”
Mrs Durrant-Peart and her paramedic husband, Brian, had been through two difficult rounds of IVF, when she fell pregnant naturally with Etienne.
He arrived by C-section three weeks early in 2018, joining his older brother, Arte. The boys now also have a younger sister, Aya.
Etienne returned to hospital at just a few days old, jaundiced and dehydrated, having lost 20% of his body weight.
Etienne spent almost a week in special care before being discharged. However, he was often unwell, and struggled to feed. His parents also noticed he was not making much noise, and that he was a baby who “spoke with his eyes”.
At one year old, Etienne started dribbling excessively, which at first his parents put down to teething.
However, during the pandemic, Mrs Durrant-Peart couldn’t help feeling that there was something “not quite right”.
Etienne slept badly, constantly coughing and dribbling, and contracting croup again and again.
After a GP appointment, Etienne was referred to a speech and language specialist. By this time, he had already had surgery on his tonsils and adenoids.
The specialist found that Etienne had low facial muscle tone and a narrow upper airway.
“That explained a lot of the breathing difficulties, all the croup, all the times we had to get up in the night to rush him to A&E because he couldn’t breathe,” said Mrs Durrant-Peart.
“It’s just horrific, watching your child struggling to breathe.”
The ENT consultant suggested to Mrs Durrant-Peart that Etienne’s symptoms may be caused by a syndrome, and referred him to neurology.
“It was test after test after test,” said Mrs Durrant-Peart. “But he’s so resilient. He’s so happy and bubbly. Nothing fazes him.”
An MRI scan showed that there had been changes in Etienne’s brain. He is now under the care of multiple consultants, but nobody has been able to give a clear diagnosis into what is causing his symptoms.
This is particularly worrying for his parents, as they believe he is developing new symptoms as the years go by.
Recently, Etienne started having ‘vacant’ episodes, one of which left him unable to use his right left for hours. He also needs to have all his food thickened due to his weak muscles and the airway surgery he has undergone.
“He broke my heart the other day. He said, Mummy, I just want to drink water,” said Mrs Durrant-Peart
Blood tests could shed further light on Etienne’s condition. However, he does not currently qualify for further testing on the NHS.
It was a friend who suggested to Mrs Durrant-Peart that they have the test done privately, and ask their community for help.
"It all just kind of clicked,” she said. “They said, you guys as a couple help people all the time. It’s your turn to get help.”
Mrs Durrant-Peart set up a GoFundMe page sharing Etienne’s story on Thursday.
As of Monday afternoon, they had raised £9,600.
Etienne’s parents are now relieved and thankful that Etienne will be able to have the blood tests he needs, and any further tests required.
Mrs Durrant-Peart's advice to new mothers is follow their instincts when it comes to feeding difficulties.
“If you’re in any doubt, get help,” she said.
To donate to the fundraiser, click here
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