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 [email redacted].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.