The mother of Harvey Morrison has said the root problems in the care of children with scoliosis and spina bifida need to be addressed to avoid history from repeating itself.
Harvey, from Clondalkin in Dublin, had spina bifida and scoliosis and was nine years old when he died in July.
He waited a number of years for spinal surgery and was first placed on the waiting list in February 2022.
The curvature of his spine was 130 degrees when he had surgery last November.
Harvey's mother, Gillian Sherratt, said she and Harvey’s father Stephen Morrison were concerned whether the inquiry would be "truly effective" and whether it would result in "real change".
Speaking on RTÉ’s Morning Ireland, Ms Sherratt said they have seen issues in relation to neurosurgery and accessing neurological care.
"We need to look really to get to the root of the problem so that we can address it going forward.
"Because what we don't want is history to repeat itself."
Ms Sherratt said that the inquiry is a "large undertaking".
We need your consent to load this rte-player contentWe use rte-player to manage extra content that can set cookies on your device and collect data about your activity. Please review their details and accept them to load the content.Manage Preferences
"We're talking about hundreds of children, if not thousands of children, going back decades across multiple hospital sites.
She said that one of the most important aspects of the public inquiry is that it would have "the power to compel".
"We don't trust that the staff working within the health system will be forthcoming with providing documents and statements and things," she said.
'I feel like they wrote him off'
Recently it emerged that Harvey had been taken off the CHI waiting list for urgent scoliosis surgery without his parents' knowledge or consent.
A weekend report in The Sunday Times claimed he was removed from the list as it was believed he was a palliative patient.
The newspaper says the claims were made by a whistleblower within CHI in a protected disclosure which is currently under investigation.
This was despite Great Ormond Street Hospital in London saying that he was a suitable candidate for spinal strengthening surgery.
Ms Sherratt said some of the language contained within the protected disclosure was "like a gut punch".
"I don't see how it could be done accidentally, but that'll have to go through the Protected Disclosures Commission to kind of get the answers that we need in that regard.
"I feel like they wrote him off."
Ms Sherratt added: "My concern is that there'd be other children that may have also been wrongly labelled as palliative, that are still alive, that may not survive if this isn't addressed quickly."
Watch: Gillian Sherratt says Government has agreed in principle to statutory public inquiry
Ms Sherratt said that they have been told that the public inquiry will be "completely collaborative".
She said a mediator will be appointed who is independent of Government, the HSE and CHI.
This mediator will then "sit down" with advocacy groups, the Spina Bifida Hydrocephalus Paediatric Advocacy Group and the Scoliosis Advocacy Network, Ms Sherratt said.
Regarding the possibility of the public inquiry taking a long time, Ms Sherratt said that no one is under the impression that it would be fast.
"As I said, you're talking decades of neglect of our children. We, the advocacy groups and parents, have been campaigning for this and fighting for this for a decade already.
"It needs to take as long as it takes to have the effect that we want it to.
"We don't want it to drag on for, say, 30 years, but we need to make sure that time isn't the concern.
"Our concern is that it gets the answers that we need," she said.
