Will you make timely access to #scoliosis & #spinabifida care your red line issue ?
With the General Election approaching, we ask you to make timely and safe care for children with scoliosis and spina bifida a red line issue. Here’s how you can help:
🚨Raise the Issue: Bring this up with candidates and at debates. Let them know it matters.
⚠️Show Support: Change your profile picture to raise awareness using the attached image, or share our post.
‼️Spread the Word: Retweet, share, and keep the conversation going.
@SBH_PAG #BackUs
Together, we can ensure every child gets the care they deserve. #BackUs #RedLineIssue #Scoliosis #SpinaBifida #Election #GE
I will keep fighting for children with scoliosis and spina bifida to get their operations. Instead of having a go at me, Simon Harris should fulfil the promise he made to these children and their parents in 2017. 7 years of broken promises and excuses is not good enough. These children deserve better.
Harvey is my red line in the next election & he should be yours too. I can't vote for FF/FG. Our last three Taoisigh were also Ministers for Health and STILL we have over 260 kids in this living hell. Make Harvey your red line. Punish inaction, vote for change. #Harvey
Hey everyone, thanks so much for the support! I just want to address the comments about go fund me for treatment because I’ve seen it come up a lot. If this was viable we would have done it long ago, but unfortunately for Harvey and a lot of the more complex children it’s just not an option. The private hospitals here in Ireland are not equipped to deal with the really complex kids that need a full multidisciplinary team, neurosurgeons and ICU beds etc. travelling overseas is also only suitable for some cases. Firstly, travelling would be a nightmare for Harvey logistically, his sister is due to have open heart surgery at the end of this month so we need to have her hospital team available in case of issues, then it’s also not a one and done surgery for Harvey. He will need to have the rods lengthened roughly every 6 months to allow for growth and if we went and got treatment in another country we couldn’t ensure he would get the follow up care here on return. He also needs so many different specialists involved in his surgery and aftercare that it wouldn’t really be in his best interest to have him treated in a hospital that is unfamiliar with him. So I know most of you mean well but believe me, if we could we would.
1. Is when I pulled her file and we found out it was scoliosis. A year after being medically gaslit with no intervention. Told I was imagining any curve. March 2024
2. Was 3 months later. July 2024. Surgeon had said it was too late to brace but progression is so fast. Lungs compressed to less than 60%. Can’t manage stairs or playing
3. Another 2 months- September 2024z Everything is symptomatic. Joint pain, rib pain, breathing, heart rate affected, muscle pain, fatigue.
Still no date for surgery.
Still no answers against those who failed our child.
Lack of accountability, lack of transparency and lack of communication.
Lies being told to parents thinking we won’t talk to each other.
‘You’re a great advocate for your daughter’
I should NEVER have to be an advocate for my child.
No child would need an advocate if people are doing their jobs.
If a doctor in genetics who knows the system cannot get answers what hope has anyone else.
The actions and lack of by CHI are destroying my child and family. Everyday longer is a higher risk of death for my child on that table under a 9 hour surgery. Let our daughters surgeon save her life. Give him the tools, support and means. @SimonHarrisTD @DonnellyStephen @CHI_Ireland@Eds4Ire@scolionetwork@ScolioIreland #orthopaedics #spinal #chi
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