The cost is quite immense and more than we can afford plus there are the expenses of travel, staying over etc.
We have in the past raised money for Sheffield Children’s Hospital where Tyler is currently treated for all three of his conditions and do have some savings and donations that total approx. £300 that we can put towards everything and are looking at raising some funds in other ways too; but the fact is time and we are running out of this as we have only recently been told that the curve has advanced so much and that Tyler needs surgery as soon as possible.
This is Tyler’s Experience …
Tyler turned 9 in August 2017. I noticed something wasn't right with his back in early April 2016 so made an appointment with our Doctor. The Doctor noticed that Tyler had a curve in his spine (scoliosis) and something wasn't “right” so he went from going to the Doctors appointment to see consultants at Louth Hospital who then referred him to Sheffield Children's Hospital who did an MRI scan on his spine; Tyler was then recalled for another MRI but this time with dye to look at his brain. He was found to have not only the curve in his spine but also two other conditions called Syringomyelia which is a rare disorder where cysts forms within the spinal cord and Chiari Malformation where the lower part of the brain pushes down into the spinal canal. The consultants at Sheffield Children's Hospital spoke to me and to Tyler about surgery for the Chiari Malformation as the malformation was putting pressure on the brainstem and spinal cord and was obstructing the flow of fluid around the brain and spinal cord. The decision wasn't an easy one as there was a chance of complications from the surgery but the symptoms endured daily would be worse as within months Tyler would have been paralysed and unable to do what a child his age loved doing; his passion is football but he wouldn't have been able to walk, possibly talk, swallow or use his hands. On 8th December 2016 Tyler was put into the hands of the surgeon for his brain surgery on the malformation - four and half hours later he was back on the ward at Sheffield Children's Hospital but has since had to have more MRI scans, numerous hospital visits etc but the surgery although helped greatly with the pressure the syringomyelia and the scoliosis were still there ! Since surgery the curve in his spine has now progressed to 65 degrees despite wearing at first a Boston brace and now a SpineCor Brace for 20 hours a day and he is suffering with pain, breathing problems and posture. Tyler also suffers from dizziness, severe headaches, balance issues, nose bleeds, numbness and tingling due to the Chiari and Syringomyelia. Like a lot of children Tyler wrote his Christmas Present List for Santa back in December and he asked for a scooter, chocolate, a football and the last two brought us all to tears ... for my back to get better and to have no more pain ! The story of Tyler's List to Santa went into the local paper (The Lincolnshire Echo) and was then picked up by the Daily Mirror and the Daily Mail. Tyler had another MRI in November 2017 and the cysts are still there and the curve has progressed rapidly even though he wears the brace as instructed (we have only just received the results from his last MRI) !!! We have spoken to a consultant in London who has previously carried out VBT (Vertebral Body Tethering) surgery and also to one in Germany. Ourselves, the consultants and many other people believe this is the best way forward and most logical option for Tyler due to his age, the degree of his curve and the effects this is having on him physically and emotionally. If Tyler has the ‘traditonal’ surgery growth rods will be inserted until he is between 13-15 years of age and then he will have to have the rigid rods/fusion that would be inserted into his spine once the growth rods are removed.
Although both growth rod and rigid rod/fusion operations are excellent and have been performed for many, many years with success they can limit flexibility/mobility and even now; in 2018 are very invasive.
VBT surgery is ‘growth modulation surgery’ and there is no need to fuse the spine. It gives the opportunity for the spine to straighten whilst flexibility is maintained as it uses screws and flexible cord and is much less invasive than the ‘traditional’ route. There are other complications with the growth rods/straight rods/fusion including scarring, length of operation, higher risk of infection, muscle/bone/tissue damage is more evident and blood loss is voluminous.
Tyler is a happy go lucky boy who is polite and is really caring towards his two sisters Evie and Lola and dotes on his baby brother Oakley. He is a very talented footballer and plays with Lincoln City Youth Academy and could go far as a left footer always scoring a goal or many times a hat-trick for his team. He has more footballs than the shops; receiving 8 of these for his 9th Birthday last August. He enjoys school and loves his food.
Thank You for reading this and we hope that as many of you as possible will share it
- Stacey Hicks
- Janet Johnson
- Jacqueline Walker
- Gary Longyear
- Andrew Mcmillan
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