Thank you for visiting this page. I am sure some of you will all be aware of Scoliosis and VBT (vertebral body tethering) by now if you have watched Britain’s Got Talent and the very courageous and talented Mersey Girls.

I hope to raise enough money to enable my son and other sufferers to have this life changing operation called VBT. I discovered our son had Scoliosis in the November of 2015 when he walked in the sitting room without his t shirt on and I noticed his right shoulder blade visibly protruding out. After Googling it, and hoping that it was just a winged scapula I contacted the Dr immediately, but he would not see us as he said there was no urgency. When we finally saw him in the January 2016 I had done a lot of research into scoliosis and also found out about VBT, and consequently, that there is urgency for all young people with this condition to see someone quickly.

In July 2016, 8 months after I had discovered his condition, and we got our appointment to see the consultant, his spine, which is bent into an S shape, had gone from 44 at first diagnosis in the February, to 56 degrees. I asked about VBT but was told at the time that it was not carried out in the UK (even though it was) and we were offered fusion. But in my heart I knew VBT was the most logical option.

Our son is now 16 and has just finished his GCSE’s. When he was younger he used to swim twice a week, go to cubs, he loved camping and the outdoors and he even used to go to Street Dancing lessons for over two years. He also used to love having his photo taken – but not anymore. He has totally withdrawn into himself and does nothing, and refuses to have any specific pulicity about him, its heart breaking. He is a loving and hard-working young man and has been accepted on a Plumbing and Heating course at Lancaster College and is due to start in September. His work will involve getting into some very tight and awkward spaces, so the ability to bend and flex without pain is crucial. I want to give him every chance to pursue his career to the full

Scoliosis and Fusion v VBT

Scoliosis is where the spine twists and curves to the side often forming a pronounced S shape. It can affect people of any age, from babies to adults, but most often starts in children aged 10-15. It also affects more girls than boys. Visually people can have a notable stoop when walking; a pronounced winged scapula, rib / back hump and twisted back. It can also affect your lung capacity, and cause issues with other internal organs when the twisting causes pressure and discomfort. Many people do experience severe pain and discomfort. The degree of the curve and symptoms will increase as people get older.

Daniel's most recent x-ray 1/8/17

Fusion is a brilliant operation and was introduced in 1953 by Dr Harrington. It involves inserting metal rods either side of the spine and fusing the vertebrae, so the spine becomes rigid. However, this procedure obviously limits flexibility and movement, which will be important to Daniel if he is going to be able to live a normal pain free life and pursue his career in Plumbing and Heating.

But what if there was no need to fuse the spine? VBT is new and wonderful operation that burns no bridges. The procedure was pioneered in the USA, just over 10 years ago, and is a procedure based on a less invasive procedure that allows the spine to retain its flexibility. This procedure will straighten Daniels spine whilst allowing him to remain flexible. Screws are placed in the affected vertebrae then a flexible cord is threaded through to pull the spine in a straighter position. This realigns the spine but maintains flexibility. The beauty of this surgery is that it is less invasive than fusion, involving a five-inch scar as opposed to a full spine incision down the middle of the back. It takes less time, minimises blood loss, there is less risk of infection and a faster recovery time, as there is less muscle, bone and tissue damage.

So why are we fundraising?

We had an appointment to see a consultant in the UK (the operation would have been free under the NHS) in October 2016 which was cancelled, as we understand funding had been withdrawn. Therefore I found two consultants one in Germany and the other in Turkey. After visiting them, both thought Daniel would be a good candidate for VBT. We have chosen the consultant in Germany Dr Trobisch as he is nearer but also more cost effective. The date we have been given for his operation is the 4th October 2017, but have to pay the full amount of £32,500 3 weeks in advance. We would also have to cover travel, accommodation, insurance and aftercare for up to 6 weeks and return if there are any issues.

The cost is more than we can afford so we are trying to raise as much as possible to enable Daniel to have the operation.

I know this is a big ask…… so a big thank you in anticipation

Thank you for taking the time to read this and please share with as many people as you can. We will be organising fund raising events and ebaying / FB auctioning the things that have been sat in draws for years. We have also created a FB page - https://www.facebook.com/danieldiddyion/ if people would like to contact us directly.

Shaun and I have been lucky with our health and have never needed anything from the NHS (bar the odd prescription) but now we need support for Daniel they cannot offer us a choice. Daniel’s curve will be increasing every year and if it reaches, as I understand, the 70 degree cut off it could prevent him from being a candidate.

We can’t thank you enough for your help and support with this and if we happen to raise more than we require, please be assured that the money will go to another family looking to raise money for this life changing operation.

We appreciate this is a big ask, but anything donated will be really appreciated and will help us get Daniel the treatment that he needs.