She has managed to keep wearing the brace and the curve has remained at 44 degrees despite her growing about 5 inches since she got it!
The problem lies in the fact that her future remains uncertain: women with scoliosis tend to find that their curves progress with hormonal changes throughout their lives meaning that despite having little growth left, Midge is likely to still eventually need surgery.
Here in the UK the only option currently available is fusion surgery which involves inserting spinal rods down the length of her spine. While this is a very successful surgery and the surgeons are highly skilled it is not without risks and for Midge being only 14 it would have life long implications and would impact her mobility meaning her range of movement (which is currently not too bad) would be severely impacted. The other issue we have is that she has a connective tissue disorder called EDS which means that the fusion surgery would be much more risky than the keyhole surgery we are hoping to fund.
In Europe and the USA there are alternative surgeries available and we are so grateful to have found a world leading surgeon in Istanbul who has agreed to perform a much less invasive surgery on Midge (VBT - which is done via keyhole surgery and does not involve fusing her spine, has a quicker recovery time and will leave her spine flexible) therefore enabling her to continue to do everything she does now. She just wants to live like a normal teenager but she is often unable to do things due to pain and tiredness.
However the cost of this surgery is not covered by the NHS (although they have recently agreed VBT should be trialled in the UK this will be too late for Midge).
Time is of the essence for Midge since she doesn't have much growth left and she needs this surgery ASAP. We therefore hope to travel to Istanbul in September for Midge to have the operation with Dr Alanay. We need to raise £45,000 (this is just the cost of the procedure and does not cover any travel, accommodation or insurance costs. We will need to travel to Istanbul at least 6 more times for check ups with Dr Alanay after surgery). We are doing all we can to fund this ourselves and are hoping we can take out a second mortgage on our house but even with this we need all the help we can get.
We know it is a lot to ask and there are so many deserving causes but every penny we raise will help Midge to have the best quality of life possible.
Please help us to do this for Midge.
Thank you for reading
Midge's very grateful parents Mel and Paul Bridge
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