Dee, Will'sšMamš¤William Desmond Ring RIPš¤Our precious, beautiful boy was tragically taken from us, 22/06/24 aged 9 1/2š¤#hydrocephalus#VPshunt#spinabifida
It's the last day of June; the last day of CMV Awareness Month. I got very little traction on my posts about CMV. Just b/c you haven't heard of it doesn't mean it's rare. It isn't. It's more common than Down Syndrome or Spina Bifida. There are measures you can take to help prevent your unborn baby contracting this common virus while you're pregnant. PLEASE share this information. I wish someone would have told me about CMV when I was pregnant with Brendan BjĆørn (RIP).
55,000 #Disabled Adults Over 25 YO Forced To Live At Home With Parents Over 60 YO Enforced Unpaid #Carers For Their Adult Children -What Is Plan For This Demographic? We Are Told By HSE We Must Care For Our Beautiful Adult Children āUntil We Dieā -Ireland A Cruel Ableist State š„²
The @CHI_Ireland Board was substantially refreshed in 2025 by @CarrollJennifer to strengthen governance and oversight, a number of members appointed from organisations including @HSELive.
Since this new Board was appointed, what has changed?
Was the Board aware that children were being moved from the spinal active waiting list to the clinically suspended waiting list without a TCI (To Come In) date?
Was the Board aware that children were being recorded as active despite not having completed the preoperative investigations and assessments required to proceed to surgery?
If the Board was aware:
When was it first informed?
Did it consider these practices compliant with NTPF guidance?
What action did it take to change them?
If the Board was not aware:
Why were these issues not brought to the Board?
What does that say about CHIās governance and reporting arrangements?
The Minister appointed a largely new Board to improve governance. Families are entitled to ask a simple question
@SBH_PAG #BackUs
āWe tried everything we could, but I knew Killian was dead before they put him in the ambulanceā -
āļøCatherine Fegan
Teenagerās death from cardiac arrest after asthma attack leaves family wondering whether he would be alive today if four medical appointments had not been cancelled
In November 2025, an inquest found he died due to medical misadventure. On Tuesday, a letter of apology from Childrenās Health IrelandĀ for shortcomings in Killianās care was read out in the High Court.
āMy mam and dad used to be in and out of Temple Street with him, and all the appointments were getting cancelled for the specialists.ā
Jordan (29) said he could see the disappointment in his brotherās eyes every time he returned from the Dublin hospital.
In court on Tuesday, Jonathan Kilfeather, appearing for Killianās family, said Killian presented at the hospital on up to 11 occasions with acute exacerbation of his asthma or with an asthma attack.
Counsel said it was their case that on none of the occasions was he treated appropriately.
#RIP #Killian #CHI #TempleStreet
https://t.co/1qLYEVnDGr
Sometimes it amazes us how tone def Gov have become.
Visiting an orthopaedic hospital while so many of us campaigners who are over ten years fighting for decent orthopaedic services for our children.
Unbelievable to be honest but not surprising.
#ScoliosScandal
@SimonHarrisTD speaks about Active wait lists.
Our son has been waiting for spinal surgery since Nov 24.
Moved from active list to suspended.
He has disappeared from the public figures, but still waits for surgery.
Harris doesnāt represent my child
That makes four. What did you say, @CarrollJennifer? Only one group hasnāt engaged? Do you need a dictionary to understand what 'transparency' means? That wasnāt exactly true, was it?"
We stand in solidarity with Gary Farrell and everyone at Scoliosis Ireland.
Patient advocacy groups repeatedly raised concerns.
The Minister @CarrollJennifer chose to proceed with the process rather than address those concerns through direct engagement.
Three organisations have now publicly withdrawn. We understand others have similar concerns.
An inquiry into children must start by listening to the voices of children and their families. @SimonHarrisTD@MichealMartinTD
https://t.co/iQNfBG7ipu
@SBH_PAG #BackUs
Government must listen to families and act on serious concerns raised about CHI inquiry ā Sorca Clarke TD
"Families and advocates want one thing: to uncover the truth of what happened to their children and make sure it never happens again."
https://t.co/JKcVQhgdVj
@caulmick Deflection & Omission as usual.
Advocates representing children who have died or become further disabled by the purposeful medical neglect @ CHI are being blindfolded & asked to accept that other secret reports, that confirm the neglect itself, are off the table & not relevant!
The families and advocacy groups affected by the crisis at Childrenās Health Ireland have shown extraordinary courage, persistence and dignity in their campaign for truth, transparency and accountability.
It is deeply concerning that groups representing more than 900 families now feel they have no option but to withdraw from the scoping process for a statutory Inquiry.
The Minister must urgently and meaningfully engage with these advocacy groups and with the families they represent. The Government made commitments to families and these commitments must now be honoured.
āSpinal-patient families shun Coalition-sponsored talks on inquiry into Childrenās Health Ireland.ā
This is less a shun but more a statement that we cannot trust the process.
It has been flawed from the outset and the way we have been treated is nothing short of scandalous.
It seems to be acceptable from Gov, scandal after scandal and children left suffering when it comes to their vital healthcare treatment for scoliosis and weāve had enough of these games.
@CarrollJennifer@SimonHarrisTD
https://t.co/uZBhLvpJhZ
The MOH @CarrollJennifer may have forgotten promises she made in Nov 2025 but we have not . We will not ask families to engage in a flawed process set up to ensure the inquiry fails to give them the answers they deserve . @SBH_PAG@scolionetwork
https://t.co/ZG7EkC3TrV
Almost exactly a year after we lost Harvey and held the biggest disability led demonstration in the history of the state calling for an inquiry we have been āš¦šµš®š³šš²š±ā.
Government have ducked and dived, made false promises and to be honest we never did trust them when it came to delivering what was promised.
Another shameful episode for this Government but donāt think this will be the end of it, oh no!!!!
#justiceforharvey
@GillSherratt23 @mulvanypeopleb1 @scolionetwork@UnaKeightley