Help! Holi needs spinal surgery .
Donation protected
Holi needs specialist surgery to straighten her spine. Despite wearing a rigid back-brace for four years our 16-year-old has just been told that her back is twisting at an alarming rate. We need to move quickly.
Here is our story...
Five years ago, Holi's older sister, Alis, was diagnosed with scoliosis - a twisted spine. The best surgery available (tethering) wasn't being offered in the UK so we raised 35,000 euros and took her to Germany.
It sounds simple when you say it quickly but every step of the way was so difficult - finding the best treatment, choosing a surgeon, publicising Alis's condition, fund raising, taking her all the way to Germany, saying goodbye as she was wheeled into theatre...
There were good moments too - not least the genuine kindess that we felt from people around us. Of course, people were amazing - raising annd donating money made Alis's surgery possible - but the outpouring of love was something that still moves me to tears today. It kept us strong.
And so to today - Holi is now 16. This is the same age that Alis was when she had surgery. Holi though was diagnosed when she was much younger and wore a back-brace for 4 years. She stopped wearing it once she stopped growing and everyone thought that her spine had stabilised with just a small curve. She measured 31 degrees, which is far from straight but we were told that it had been successful so had every reason to believe that it was unlikely to progress to the point where it could become life-threatening.
Holi has complained more and more of pain recently, and now finds it hard to walk for too long without needing to rest. We thought that her back looked more lop-sided too so we took her for an x-ray. We were heart-broken to see that her curve has progressed to 56 degrees in just a year. No wonder she is in pain.
Tethering - the treatment that Alis had - is now being trialled in the UK but the parameters are strict and Holi is considered just too old. We know that Alis's case has been used by the NHS though and that she - and children like her - are paving the way for treatment of scoliosis sufferers in the UK in the future.
That doesn't help Holi. This surgery is best performed on younger people with as much flexibility as possible so we need to move quickly. After two terribly disrupted GCSE years due to COVID, we also desperately want Holi to have a chance of pain-free A level study - and some normality.
So now for the second time, we need to take a child to Germany for life-changing surgery. Fund raising is likely to be harder because of COVID but we will do our best. Luckily, we knew there was a chance that the brace might not work and, whilst we hoped this wouldn't be the case. we started saving and now need to raise about £18,000. This is much better than the £35,000 that we needed to raise last time.
Surgery is booked for the 28th July.
Here is our story...
Five years ago, Holi's older sister, Alis, was diagnosed with scoliosis - a twisted spine. The best surgery available (tethering) wasn't being offered in the UK so we raised 35,000 euros and took her to Germany.
It sounds simple when you say it quickly but every step of the way was so difficult - finding the best treatment, choosing a surgeon, publicising Alis's condition, fund raising, taking her all the way to Germany, saying goodbye as she was wheeled into theatre...
There were good moments too - not least the genuine kindess that we felt from people around us. Of course, people were amazing - raising annd donating money made Alis's surgery possible - but the outpouring of love was something that still moves me to tears today. It kept us strong.
And so to today - Holi is now 16. This is the same age that Alis was when she had surgery. Holi though was diagnosed when she was much younger and wore a back-brace for 4 years. She stopped wearing it once she stopped growing and everyone thought that her spine had stabilised with just a small curve. She measured 31 degrees, which is far from straight but we were told that it had been successful so had every reason to believe that it was unlikely to progress to the point where it could become life-threatening.
Holi has complained more and more of pain recently, and now finds it hard to walk for too long without needing to rest. We thought that her back looked more lop-sided too so we took her for an x-ray. We were heart-broken to see that her curve has progressed to 56 degrees in just a year. No wonder she is in pain.
Tethering - the treatment that Alis had - is now being trialled in the UK but the parameters are strict and Holi is considered just too old. We know that Alis's case has been used by the NHS though and that she - and children like her - are paving the way for treatment of scoliosis sufferers in the UK in the future.
That doesn't help Holi. This surgery is best performed on younger people with as much flexibility as possible so we need to move quickly. After two terribly disrupted GCSE years due to COVID, we also desperately want Holi to have a chance of pain-free A level study - and some normality.
So now for the second time, we need to take a child to Germany for life-changing surgery. Fund raising is likely to be harder because of COVID but we will do our best. Luckily, we knew there was a chance that the brace might not work and, whilst we hoped this wouldn't be the case. we started saving and now need to raise about £18,000. This is much better than the £35,000 that we needed to raise last time.
Surgery is booked for the 28th July.
Organizer
Suzanne Kingston
Organizer
England
