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During a holiday this summer, we noticed that our daughter Abbie had a slight crease to one side of her waist. This hadn‘t been something we noticed before, but as she stood with her back to us in a bikini, it looked as though she wasn’t standing straight. We thought there may have been a problem with her hips, but nothing could have prepared us for the news we were about to receive.

In September we saw a consultant at our local hospital. He sent Abbie for an xray and we returned to see him afterwards. I will never forget sitting in that little room holding Abbies hand as the consultant said “have you seen this?”. I responded no and as he turned the screen round we saw Abbies spine for the first time. That moment floored us and suddenly Abbie seemed much smaller than she had moments earlier. We were given the news at age 13, that Abbie had scoliosis. There is no family history and until then, very little sign of what was happening to her.

We have recently been told that Abbie has adolescent idiopathic scoliosis. Her curve is now at 70 degrees, an increase from 63 degrees in September. She has been told she will need full spinal fusion surgery. This will mean that she will loose flexibility in her spine. We cant begin to imagine what this will mean for her and what limitations this will put on her later in life.

This is the only treatment on the NHS, but there are pioneering surgeries called VBT or ASC, which instead of using steel rods uses a tether to bring the spine back in line, whilst retaining flexibility.

Unfortunately this means looking to fund Abbies surgery privately and most likely travelling to either America, Germany, Spain or Turkey. Something that we cannot afford on our own.

Currently the wait for spinal fusion on the NHS is over a year. Scoliosis is a progressive condition and whilst Abbie grows, this will mean her curve increasing. She is already in pain and discomfort and it breaks our heart to see her like this.

Abbie is a kind, bright, brave and wonderful daughter. She has the biggest heart and always thinks of others. Even after the shocking news of her diagnosis her first thought was how to tell her sister as she didnt want her to worry.

Please consider donating towards Abbies fund. We feel that this will give her the best chance of living a full and able life. No matter how big or small, it will all count and we will be forever grateful. We hope to raise enough for surgery either VBT, ASC or sooner private fusion surgery, physio and enabling Abbies recovery. Thank you for your support 💕

* in the event of us not raising enough for surgery, or NHS surgery happening earlier, we will set up a group of trustees including Abbie to look at how the money could be spent. This would include Abbies recovery, physio, any hospital that has helped her and other scoliosis charities

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UPDATE 8/2/2020

So yesterday was a very long day! Travelling back from London at 5pm on a Friday is the worst, but we are further forward now and set on what will be the best option for Abbie.

We really liked the consultant, a real family man, very honest and open with a passion for the work he does. Not just thinking of the here and now, but Abbies long term future. Some extremely scary facts in there, very difficult to hear especially as your child is sat beside you, fatality or paralysis, but when you calculate the percentage it is thankfully extremely rare. Unfortunately leaving it is not an option and surgery becomes more risky/complex the older you get, so we and most importantly Abbie, have come to terms with the fact she has to have the operation. Every day Abbies bravery amazes us and we couldn’t be more proud 💕

☹️ The bad news - she is not ideal for VBT (the tether option). We had bending and hand xrays yesterday. Although the spine is showing good flexibility, her hand X-ray shows her growth is slowing (interesting fact, who knew you could tell how much growth someone has left by their hand 🤔) We kind of knew tethering may not be the best option for Abbie, looking at the case studies of VBT at the awareness event we attended, the best corrections seem to come from younger patients. The older the patient, the stiffer the spine, making it more difficult to correct the curve or get such a good result.

🥺 The NHS option with our current consultant - he has recommended fusing Abbie top to L4, pretty much her whole spine. The waiting list is at least a year. She will lose pretty much all flexibility and only be able to bend with her hips. I have been a member of UK scoliosis parent groups for a while now and there are countless stories of cancellations. Some of these have been 30 mins before the op. I can understand the cases where the high dependency unit bed is needed for an urgent case, but others have been due to admin errors or faulty equipment. One lovely supportive Mum I have been speaking to are on their 4th cancellation and said the boy that was having the surgery that day had it cancelled 8 times!!! What would that do to an adults mental health, let alone a child? 😢

😊 the good news! Abbies spine has really good flexibility! The bending X-ray is completed with a pillow under the side of her waist. This shows with manipulation how straight her spine can be bent. The consultant said he is able to offer anterior fusion going through the side, rather than her back. Most surgeons go through the back as it is less work and the standard way of doing fusion. However, he said you can get a much better correction through the side and removing a couple of disks, meaning that he can fuse less. This also means less damage to the spinal muscles as it allows more disks to move and retains more flexibility. Again the window of opportunity for this is within a year. The more the curve progresses, the more complex it becomes and Abbie will most likely have to have complete fusion.

Costs 😳 £50,000 approximate but he will get exact costings to us shortly.

So we ask all of you again to please share and let us know all of your fundraising ideas. We will be posting events and various fundraising opportunities shortly. We have the walk at Draycote coming up on 23rd February and hope to see many of you there!

Abbie is an amazing and courageous young lady. Please support her all you can as this means the world to her 🌎

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