Disability: Anglesey parents' pledge to baby born without hand
- Published
The family of a baby boy born without a hand say they want to normalise limb differences for other children so they "never feel like they need to hide".
Five-month-old Arthur Roberts from Anglesey was born without a lower left arm.
His parents Elliw Williams and Ilan Roberts, both 25, are planning an event bringing people like Arthur together.
They want to raise awareness of his condition and to "show Arthur that he's not the only one".
Ilan said: "We don't want him to grow up to be ashamed of how he was born, or to be shy about it, or hiding it because that's just the way he was born, just a little bit special."
It was during the 20-week scan that Elliw and Ilan found out Arthur was missing his left hand.
"It was quite scary at first, we were a bit shocked," says Ilan.
Elliw added, "It's very lonely finding something like that out and not knowing anybody who's been through it and not having someone to speak to."
But once the news sank in they described it as a relief knowing there was nothing more serious going on.
Ilan said: "After that 20-week scan the scans just stopped and it was from then on that we were able to enjoy the pregnancy. We said from the start that as long as he is healthy and happy then everything is OK."
Over the next few months, the couple began to research the condition and noticed it was more common than they had thought.
"I looked on things like Instagram and started to see more people who had something similar to Arthur. Being able to see other children living their lives normally, doing things like riding a bike, that's helped us," said Elliw.
Ilan added:"We just don't want him to be left out or feel different to anyone else and seeing all these people who are like him and can do anything everyone else can do is great."
Mollie Pearce, who reached the final of the hit BBC show The Traitors, used the platform to share her experience of living with a limb difference.
"I've kind of spent most of my life since I was 11 years old unwell," she said on one episode of the show.
"I kind of wanted to advocate for people with a limb difference and a stoma," she said.
"If I look at myself three years ago, I couldn't even leave the house at points. So, to now be here running around with you guys is kind of crazy."
Elliw and Ilan hope to host an event shortly bringing people like Arthur together from across north Wales.
"We want to help Arthur as much as we can because I imagine he's going to need it one day and this will allow us to speak to other parents who have already been there and know some of the challenges we might face: things like tying his shoes or doing a zip which could be harder for him," said Ilan.
"We also want to be able to support others.
"And hopefully there's someone nearer Arthur's age who we meet through this event. Someone he can be friends with, and that he can talk to about things that are difficult," he added.
Despite receiving support from charities, both feel more needs to be done to support children like Arthur.
Ilan said: Nobody can give us a reason to explain why this happened."
Elliw added: "We didn't get enough support. They didn't give us a name on the condition, we still don't have one really."
In a statement the head of midwifery at Liverpool Women's Hospital said, "Our team of experts always aim to support families during diagnostic tests."
They added: "Any ongoing support following a diagnosis should be requested and provided via the main provider of a person's care in the first instance."
Betsi Cadwaladr University Health Board was asked to comment.
JUNE: VOICE OF A SILENT TWIN: The tragic story of June, her sister and their life in Broadmoor
THE LEARNERS IS BACK: It's a new term for Jonesy's merry band of students
Related topics
- Published30 January
- Published30 January 2022
- Published2 November 2022