I’m sure if you live in Ireland you will know all about the huge waiting list for children with scoliosis to be seen by a consultant. Jono had his spinal surgery in 2009 and it was a battle back then. Sadly things haven’t improved at all over the last 8 years.
You can watch Megan and her mother talking to Ryan Tubridy on the Late Late Show on the here. It’s heartbreaking seeing children having to suffer in this day and age. Megan is one of around 200 children awaiting surgery.
Do things get any better once you reach adulthood? From our perspective no. We had hoped it would but it hasn’t appeared to be the case. Tomorrow we go to Dublin for Jono to have a CT scan which will determine if he needs another surgery or not. Jono has waited almost 6 months just for this scan appointment. Before that he was waiting 18 months to see the consultant. Throughout all of this Jono is in pain every day of his life. He is 23 years old. It’s not a way to live.
Jono is used to waiting. He was waiting for almost 8 years to be referred from Sligo to Dublin. He was seen regularly in Sligo by a consultant – and told to take two paracetamol and to lie down when we asked what he could do for the pain. It was only when I found out from an internet forum that surgery could only be done in Dublin and I asked for him to be referred that this was finally done.
Jono was lucky enough to have surgery in 2009 which involved metal rods being inserted either side of his spine. The rods were placed from his waist up towards his shoulder blades, he is now curving above the rods and experiencing severe neck and back pain. Regular physiotherapy sessions relieve the pain a bit as does the time Jono spends in the swimming pool. Jono used to love coming exploring with me but he can no longer do this as he can’t walk or stand for long periods of time.
It’s wrong that life is such a struggle for our young people. Jono has ended up in A&E due to breathing problems which may or may not have been as a result of the curve in his spine. We were told there was nothing they could do and it was suggested by the doctor there that we just arrive in Tallaght Hospital and sit there until something was done. We aren’t going to do that.
So the scan takes place tomorrow in Dublin and I have no doubt that Jono will be left waiting again to see the consultant for the results. Jono is a true inspiration, he never complains even though I know he must be so frustrated. I wish I could go through this for him and let him lead a normal life. I’ll let you know how things go.
I can’t hit the like button on this one, how terrible that he has had to suffer all these years. Wish there was something to do or an easy answer, please know he is in my prayers.
Thank you x
This is terrible for all your people. I watched the TV programme recently and my heart broke for all those families and especially the children who are in pain and who will have to suffer life long consequences for our health service failures. The same goes for all those children waiting for life saving drugs. Good luck tomorrow and hopefully Jono will get some hope.
Thank you Gretta, it is heartbreaking. There are so many children and families who have their lives on pause due to waiting or suffering.
Prayers, good wishes and lots of positive karma to Jono and your family tomorrow
Thank you Tish
I’m sorry Jono is in almost constant pain, Val. He is so blessed to have such a strong advocate in you. ❤
Thank you Susan.