An email sent to An Taoiseach @SimonHarrisTD this morning. I’ll keep you all posted if I hear back ❤️ Hi Simon, I am writing to you as an incredibly concerned parent of an 8.5 year old boy, Harvey. Harvey has Spina bifida and scoliosis which in itself is challenging, but when those conditions are coupled with a lack of access to therapy, a hospital that is potentially misappropriating funds, and incredibly long wait lists for urgent and life changing surgeries, then it becomes impossible to adequately care for your child. Harvey had an Xray in January 2024 that showed his scoliosis curve is at 110°, if you have read in to scoliosis then I am sure you are aware how this is at a point where it is detrimental to his health and quality of life. Harvey was under Connor Green and was listed for urgent surgery in February 2022 after repeated pneumonia infections, 30 months later he is still only on the surgical list under Connor Green as he does not have a surgeon willing to operate. The task force you hold in such high regard has not made contact with my family, nor is there any details online of how to contact them to enquire as to when your child will finally be treated. You continually tell families like ours that you care, and you have been promising to fix this since 2017. 2017 was the year we were told that Harvey’s ribs were crushing his lungs and controlling his scoliosis was life and death. Here we are in 2024 and nothing has changed except we now have a surgeon under investigation, longer wait lists, more children waiting, a still not complete hospital, and funds not being spent as intended and no answers yet as to where the money *we* fought for went. You say you care but your actions have left us feeling anything but. We as a family also have a child facing open heart surgery next month and this is just more stress and concern that we do not need. Another summer has just passed and Harvey has spent the majority in his room, often needing to go back in to bed because he is in so much pain. Is that the life you think the children of Ireland deserve? Would you accept that if it was your own child? Can you imagine being told your child has a potentially life threatening condition but that it will be years before it would be treated? We need actual action, not more empty promises. You need to engage with all advocacy groups, not just those that are currently working with the task force. There are very valid reasons why the other groups have chosen to not engage and they need to be heard. We need contact details and open dialogue with the task force so that we can actually feel its existence. We need answers as to where the funding for scoliosis and spina bifida services went. Most of all, these children need to get their quality of life back before their whole childhood passes. I look forward to hearing from you. Kind Regards. Gillian Sherratt
