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SPINA BIFIDA & HYDROCEPHALUS PAEDIATRIC ADVOCACY GROUP

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Feb 2022

6/2/2022

€19m in funding available for children who are in need of orthopedic surgery Christine Terry, Mother of Adam Terry on Claire Byrne Today with Claire Byrne RTÉ Radio 1 18th February 2022
Extra €19m funding for children needing Orthopaedic surgery RTÉ News 17th February 2022
Naas Mother leads campaign for Spina Bifida treatments Kildare Nationalist 16th February 2022
Kildare parents want more to be done over spina bifida in Ireland Leinster Leader 15th February 2022
Call to speed up Spina Bifida operations for children in urgent need Tipperary Live15th February 2022
Young mum reveals devastation at waiting three years for life changing surgery for daughter (6) Sunday World 13th February 2022
Cara’s two year wait for life-changing spina bifida procedure Rollercoaster.ie 12th February 2022
Midlands mother makes a stand to get operation for her young daughter Leinster Express 12th February 2022
‘You would need a heart of stone not to be moved by Ava’s situation’ The Echo 11th February 2022
Brave Cork family 'set the national agenda' on treatment for hundreds Irish Examiner 10th February 2022
Shinrone girl finally has operation after 29 month wait Offaly Express 10th February 2022
Kenmare child waits 'in agony' for surgery full article here Kerry's Eye 9th February 2022
20 Donegal children waiting on Spina Bifida appointment Donegal News 9th February 2022
AbbieRose wants to walk 1 & 2 Drogheda Leader 8th February 2022
Siobhán Is Just 15 & Needs Govt To Do Right #páistíinpain Cork's 96fm Opinion Line 8th February 2022
Cara Boyce like many children in Ireland with Spina bifida is on a lengthy waiting list for life-changing procedures. Cara's mum Tonya and dad Colin discuss the consequences. Ireland AM on Virgin Media TV 7th February 2022
Lisa & Amanda, parents of children living with Spina Bifida/Hydrocephalus in Kildare discuss how Eddie is recovering from surgery & why Cappagh Hospital needs to be funded to ensure surgical capacity is available to Alyssa in the future KFM 7th February 2022
Jodie is Waiting For Surgery, PJ talks to Amy, her incredible mum - Cork's 96fm Opinion Line
Discussion of Launch of Website The Michael Reade Show listen from 16:58 LMFM 4th February 2022
Clarity sought on where Children's Health Ireland funding will go 3rd RTÉ news 3rd February 2022
Lack of Healthcare Investment preventing children from living their best lives 3rd February 2022
New website launched for children with Spina Bifida RTÉ news 3rd February 2022
'These are just not files in Crumlin with someone's name on it, these are our kids' Irish Examiner 3rd February 2022
'Not an issue of funding': Urgent surgery wait lists for children unacceptable, says Taoiseach The Journal 2nd February 2022
Taoiseach to meet CHI, HSE over surgery waiting lists for children RTÉ News 2nd February
Why Are We Fighting For Basic Rights For Our Children Cork's 96fm 2nd February 2022
Mother fears daughter with spina bifida may lose ability to walk after four-year wait for essential surgery Irish Independent 1st February 2022

Latest News

3/2/2022

January 2022

We can see her deteriorating': Families say up to 300 children with spina bifida on waiting lists Irish Examiner 31st January 2022
Sligo Councillor calls for review into treatment for children with Spina Bifida Ocean FM 31st January 2022
Dozens of children with spina bifida are still waiting years for surgery Irish Independent 31st January 2022
"Emily is waiting 3 years she now needs more operations" starts at 7mins 40 seconds East Coast FM 31st January
56 children with spina bifida in 'heartbreaking' wait for surgery RTÉ news 30th January2022
‘Little fighter’ Cillian (6) receives hip surgery after three-year wait - 24th January 2022.
CALL TO FAST-TRACK CHILDREN’S SURGERIES 24th January 2022
Orthopaedics delays are ‘child abuse of the highest order’ says Louth Councillor Maeve Yore 19th January 2022
Cork City Council to call on Minister for Health to take urgent action for children with Spina Bifida 16th January 2022
Health Minister called on to prioritise orthopaedic interventions for children with spinal issues 21st January 2022
Louth councillor calls for fast track action on Orthopaedics 20th January 2022
‘Speed up surgical reviews’: Some kids waiting four years for vital procedures 21st January 2022
Ava has been forgotten about -13th January 2022
Local councillor calls for more funding to tackle children's waiting lists, Shannonside, 12th January
Limerick mum involved in nationwide campaign for access to paediatric services, Live95, 6th January
One Limerick mum talks about her campaign to help children with special care needs get services they need as they grow older, Live95, 6th January
Dublin parents slam 'disgraceful' waiting lists for children's spina bifida surgery, Dublin Live, 13th January
Minister must expediate surgical intervention for Spina Bifida patients, Connaught Telegraph, 12th January
"Children living with spina bifida in Ireland have been known to wait up to four years for surgery, with many facing health deterioration, amputation, and organ failure as a result of the long wait for treatment"

2021 Media

A Carlow mother says she & other parents are being made to feel that their children don’t matter, KCLR96fm 17th December
Cappagh Hospital: Brian O’Connell Reports from Today with Claire Byrne, RTÉ, 16th December
Galway boy’s Christmas plea for surgery to help him live his best life, Connacht Tribune, 16th December
Mother of Kildare boy says Ireland 'needs to make a stand' on surgery cancellations, Leinster Leader, 8th December
Due To Vital Orthopaedic Surgery Waiting Times Some Children With Spina Bifida Becoming "Deformed & Disfigured", Kfm, 3rd December
‘Our children have been cast aside for too long, we are going to fight for their rights until the Government listens’, Meath Chronicle, 2nd December
'It is serious now' - Offaly girl waiting two years for essential operation, Offaly Express, 24th November
Garreth Fitzpatrick (Parent interview), The Michael Reade Show, LMFM starts at 45mins, 19th November
https://www.rte.ie/radio/podcasts/22032238-cappagh-hospital-report/
Children with spina bifida losing ability to walk while on 'abhorrent waiting lists', Irish Examiner, 16th November
‘Children with spina bifida have gone from walking independently to wheelchairs’ – surgeon reveals detriment of Ireland’s waiting lists, Irish Independent, 11th November
Liveline, RTÉ Radio 1, 30th September
‘There is such a backlog’: A paediatric surgeon on the battle to see children with scoliosis, Irish Times, 16th February

2016

Parents: 'We're having to fight for things that should be given', Irish Independent, 23rd November
Fears doctor caring for children with spina bifida will quit over resources, Irish Independent, 23rd November
Fears Over New Doctor At Temple Street Hospital's Future

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