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Erin's Scoliosis/VBT journey

£6,890 of £45,000 goal

Raised by 184 people in 13 months
Created January 14, 2018
Fundraising team
on behalf of Pearl Morgan
Erin's VBT operation in Germany Go Fund Me Campaign For Erin Morgan-Ring SCOLIOSIS/VBT Erin’s story – Touch Your Toes to Diagnose – ‘ My Journey ‘ by Erin Sub text by Mum Ceri Morgan “Hi my name is Erin and I’m 14 years old, thank you for taking the time to read my story. I am an extremely active girl, enjoying horse riding, gymnastics and athletics and one day dreamt of being an Olympic athlete at least I did until this happened. This is my Scoliosis Journey In the summer of 2016 my mum noticed a ridge in my lower back and an indent above my right hip. Being concerned, she took me to the doctor. On examination, my GP asked me to bend over and ‘Touch my Toes'. The doctor thought I may have SCOLIOSIS, a curvature of the spine. But couldn't be sure and sent me straight away that day for an x-ray. Mum had heard of scoliosis but didn’t really know what it was....oh boy she does now! We arrived at the hospital for the x-ray and to mum’s horror it showed a huge curve in my spine, 65° to be exact. Mum was nearly sick when she saw it. When mum asked the GP how long we would have to wait to see a consultant it was 12-16 weeks. Mum was very scared at what she had seen and decided to take me privately and a few days later we were in the consultants surgery. We met Mr Alwyn Jones (orthopaedic surgeon) and after a thorough examination and looking at my x-ray he confirmed I had ADOLESCENT IDIOPATHIC SCOLIOSIS, he said I had a lumbar curve which as very low down and it was severe being at 65°. He told us that scoliosis can affect up to 10% of young girls but only 4% of boys. He went on to explain I would need an operation called ROD FUSION. When he told us what the operation would entail I started to cry, at this point as he said I would no longer be able to do any of the sports loved especially gymnastics. My dream of one day being in team GB was gone before my very eyes. About SCOLIOSIS Scoliosis is an affliction that mainly remains unnoticed in children until it develops to the point where deformity can be seen. Parents are always shocked to realise that they have missed noticing any change and feel guilty that they should have seen it earlier. Hopefully, as more and more cases become public, as in Erin’s case, more and more parents will be informed about scoliosis and keep an eye out for the signs, so that their children can be treated earlier. Erin was very brave when we discovered the scoliosis. I was shocked and couldn’t believe what was happening. However, I was determined Erin was NOT having Fusion. No Way!!  So for the next 6 months she wore a BOSTON BRACE in the hope it would stop the curve getting any worse and I prayed it would reduce it enough not to need surgery
In the meantime........ I found out about an alternative surgery being offered in America and Europe to treat scoliosis called Vertebral Body Tethering or VBT for short and quickly began looking into the pros and cons of each surgery. This type of surgery leaves the patient almost fully flexible and mobile post surgery meaning Erin would be able to continue with gymnastics and all her other sports. I started my research. I googled, read up on it and spoke to lots of people. I was told about a forum on Facebook specifically for parents involved with their children having VBT Surgery, meeting this wonderful group of mums and dads proved to be invaluable. This was the break I needed. Very quickly I learned about VBT and the fact that it had been available in the UK but no longer due to funding . I then learned it was available in the USA, Germany and Turkey. But at a cost!! At this point I was faced with four options:- 1) Do NOTHING resulting in further development of the curve(s) and further deformity. Increasing pain, immobility and possibly becoming severely disabled in later life and ending up in a wheelchair. 2) Wear a BOSTON BRACE a hard plastic body armour, a bit like a Victorian corset that has to be worn 23hrs a day! Works in less severe curves but not a long term solution. 3) SPINAL FUSION involves the removal of the cartilage between the affected vertebrae and replacing these with bone. The spine is then straightened by attaching a titanium rod on either side of the spine which are screwed into the vertebrae. Erin’s spine would be rigid and over time the individual vertebrae would fuse into one long continuous piece of bone. This would leave Erin unable to bend and twist. 4) VBT is an innovative procedure that seems to be able to prevent curve progression and also to correct Scoliosis. VBT works by holding the spine with a flexible cord that is attached to screws that are put into the spine from the side, by doing this most of the movement and flexibility would remain.   Further research gave me the determination it was the VBT way or no way!
Erin Continues…. “Mum contacted the surgeon in Germany and sent him all my x-rays and MRI scans from the last year so he could take a good look at them and make a decision as to whether he thought VBT would be an option for me. He came back with a reply within a day or two and to my delight he said he would consider carrying out VBT on my spine but would need to examine me to be completely sure. We were going to Germany!!!! Once we got to Germany and after the surgeon examined me, further x-rays showed I had developed another curve in the top of my spine so mum was praying he would say yes. I just kept asking him over and over again “can I have VBT, can I have VBT” Eventually he turned round and said “yes Erin you can” I lept up and hugged him for all I was worth with tears rolling down my face!! Although a frightening prospect, I was going to be given the freedom from possible future pain and the freedom of movement, if only we can find the money to pay for it.”…..   This is me with the surgeon in Germany, Doctor Trobisch. He is so kind and gentle and did his best to re-assure me that everything would be alright. I felt so much better afterwards. He made me promise to wear my brace every day as it was very important my curves didn’t get any worse but that continuing with all my sports was important too so that I could maintain my flexibility. As a mum watching your child go through something like this, being brave and facing the events of the last 18 months has been both devastating and heart breaking , it is something wish no other parent to have to go though. Never in a million years when Erin arrived in my arms 14 years ago did I ever imagine having to go through this with her. I am immensely proud of Erin and the way she has dealt with everything that has been thrown at her recently, being up beat, happy and always putting others before herself.  ERIN is my world and if I could sacrifice my life for her to live a normal, happy, healthy life I would.  I want to do all I can for Erin so that she can lead as normal a life as possible and not be held back by the final bond of fusion surgery. So I have booked Erin in for surgery in Germany for the 11th April this year and to say I am frightened is an understatement! But surgery in Germany costs. About £42,000.00 plus insurance, travel, hotels etc. It is beyond the reach of most families including ours. So I write this story in the hope that through whatever means I can, I will raise the money to give Erin a better life. We can not thank the people enough who have supported us so far in Erin’s journey and we will be eternally grateful. Friends and family have urged me to create this page so that they can help Erin anyway they can from donating to fundraising events. So we thank you for taking the time to read this story of Erin’s Journey so far, there will be much more to come I am sure. We are just pleased that you have been able to read this story and learn a little about Scoliosis and hopefully spread the word so that as many parents as possible can be aware and spot this horrible condition early. Ceri and Erin – forever in your debt xx   We are also starting a Facebook campaign and possible future charity in the name of - ‘We’ve got your Back’ This is to raise awareness of Scoliosis and make other parents aware of the need to keep an eye on their children in the hope that this condition is found early and therefor allow treatment before it develops too far.   We are holding a quiz night at the Deri Inn Rhiwbina Sunday 18th Feb Pen y Fan sponsored walk Sunday 4th March Black Tie Dinner Friday 9th March If you would like futher details on these events please email cerimorgan2003@yahoo.co.uk

My mother (Erin’s Grandmother)  Mrs Pearl Morgan is the beneficiary for the go fund me page and bank account handelling all donated sums.
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With the page only going live 6 days ago and already climbing above £2,000, both Erin and Myself are totally overwhelmed and very humbled by the love and support you have all shown to her. We are eternally grateful for your donations. Xx
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£6,890 of £45,000 goal

Raised by 184 people in 13 months
Created January 14, 2018
Fundraising team
on behalf of Pearl Morgan
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