Ella’s Story – Fundraising for Ella’s VBT Spinal Surgery
Thank you taking the time to visit our page, we’re fundraising for our 12 year old daughter Ella who suffers from two long term medical conditions - AIS (Adolescent Idiopathic Scoliosis) and JIA (Juvenile Idiopathic Arthritis). Life is painful for Ella and we’re raising money to enable her to have life changing Scoliosis VBT surgery overseas.
Ella is an outgoing, creative and loving girl who adores musical theatre, drawing, writing and all things Harry Potter. She is just about to start year eight and also attends a local theatre academy where she continues to learn singing, dancing and acting. Unfortunately since 2014 aged nine, Ella has suffered with ill health which has affected every aspect of her life. Ella suffers daily joint pain caused by her Arthritis and ever increasing back, neck and shoulder pain due to her Scoliosis. Scoliosis
At 10 years old Ella started to complain of pain in her right shoulder. At a physio appointment for her Arthritis, her physiotherapist spotted Scoliosis and Ella was referred to a Spinal Consultant. We’ll never forget the feelings of absolute shock and devastation when we saw Ella’s curved spine for the first time, let alone when we saw her first spinal X-Ray. We couldn’t believe that we hadn’t noticed the curve before. Ella was distraught, she’d already been through so much with her Arthritis. The consultant told us from the outset that due to Ella’s age and the degree of curvature (36T (thoracic) and 27L (Lumber) spinal surgery was highly likely. Current NHS treatment is for patients to wear a back brace (23 hours a day) and once the curve hits around 50 degrees, spinal fusion surgery is imminent. Ella has really struggled physically and mentally with the brace. It’s restrictive and extremely uncomfortable.
Ella has a double curvature of the spine, creating an S shape in her back. She is checked every six months with an X-ray to monitor her condition. This year her curves have started to progress at an alarming rate. Ella’s last check-up in May showed her curves had jumped to 46T & 39L. We had an additional X-ray last week (August 2017) and in three months it showed an even bigger jump to 61T & 45L. Again we're devastated, her condition deteriorated rapidly in a very short space of time.
As Ella’s curves progress, this starts to impact her internal organs. Her twisting spine causes her ribcage to rotate and start to squash her heart and lungs. Ella will need to have an operation much sooner than we anticipated. Her shoulder blade is protruding and she is starting to suffer from a Rib hump, increasing the daily pain in her back, neck and shoulder. Spinal Fusion
In the UK spinal fusion surgery is the only surgical option open to Ella. The procedure would involve a major operation and we’ve been advised that it could take up to a year for Ella to fully recover. The surgery can last 8-11 hours and uses metal implants (screws, wires, and/or hooks) that are attached to each vertebrae in the spine and then connected to two titanium rods. During the operation a bone graft is taken from the ribs and placed over the implants. This leaves the spine as a solid structure and will have a significant impact on Ella’s flexibility. Ella’s spine wouldn't grow any more, today she stands at 4 foot 8 inches (142cm) tall.
As parents we refuse to accept telling our 12 year old daughter this is the best option for her, Ella has so many plans for her life and we feel as parents it is our duty to make her dreams come true.VBT (Vertebral Body Tethering) Ground breaking surgery, our hope for Ella.
Due to the wonders of social media, extensive research and the recent coverage of a contestant on Britain’s Got Talent, we’ve discovered an alternative life changing treatment. VBT is an innovative much less invasive surgical procedure which continues to allow the spine to grow. It offers the patient a greater range of movement and allows the opportunity for future treatments if necessary. VBT corrects the curve by using a series of Titanium screws and a flexible polyethylene cord. Once tension is applied it compresses the adjacent screws to help straighten the spine, this process continues over time as the spine grows. Surgery takes around 4hrs and recovery is around 6/12 weeks.
VBT is not available in the UK at the moment. It has been submitted to The National Institute for Health and Care Excellence (NICE) and a number of leading UK hospitals would like to run trials. Ella unfortunately doesn’t have time to wait, her Scoliosis is progressing at an alarming rate. The window of opportunity for her to have VBT surgery is rapidly closing, hence why we have looked abroad. Our aim is to allow Ella to have VBT in either the US or Germany as soon as possible.Surgery Abroad
After much careful consideration and having consulted a leading UK specialist, we strongly believe that VBT offers Ella the best long term outcome. This innovative technique will minimise the impact that Scoliosis has on Ella’s life. Giving her the chance to fully grow into the beautiful, successful young lady we know she has the talent and potential to become. The change in Ella’s outlook since we first discovered VBT as an alternative to Spinal Fusion is significant. For the first time since she was diagnosed with Arthritis or Scoliosis, she is optimistic. This treatment offers correction rather than just managing her conditions.
We are currently communicating with hospitals in both the US and Germany to establish where Ella will receive VBT. The cost of the surgery is significant and way beyond our reach as a family. There is also all the associated costs of consultation fees, travel, accommodation, insurance and aftercare. This is why we are raising funds to secure what we believe is the best possible outcome for our gorgeous daughter. JIA (Juvenile Idiopathic Arthritis)
To further complicate Ella’s health she's been suffering with JIA since 2014. JIA is an autoimmune disorder where the immune system, which usually fights infection, is triggered to attack synovium (joint lining) causing arthritis. Ella has suffered with ‘flares’ in her knees, fingers, ankles, wrists and initially one eye.
Ella receives twice weekly injections of two separate drugs, Methotrexate a chemotherapy drug and Entanercept a biological drug. These both suppress her immune system. These injections have proved a huge challenge to Ella who has an extreme fear of needles. Initially these injections would take anything up to five hours to deliver, having a huge impact on Ella and our family life. She’s a little better now but still hates this twice weekly event and suffers from anxiety. These drugs also have side effects, leaving Ella much more liable to illness and she requires careful monitoring. The fact that she suffers from JIA further complicates any Scoliosis surgery, meaning Ella will be a somewhat unique patient.The Future
Ella is a bright, funny and intelligent girl who throws her energies into the things she loves. She loves dancing and acting and has a hugely creative side to her personality. As her parents it has been heartbreaking to see her suffer with not only the pain of her conditions but the anxiety caused by her medical treatments.
We can't cure Ella's arthritis but we can fix Ella's spine with this groundbreaking surgery. VBT is a light at the end of the tunnel. It offers Ella a way out of this horrible and potentially debilitating disease, giving her the chance of leading a normal life.
We as a family are forever grateful to the NHS for the wonderful care Ella has received from all the numerous healthcare professionals we visit on a regular basis. It would be wonderful if Ella could have VBT on the NHS but today this is not an option. We hope in the future that other patients will be offered this surgery in the UK, but in Ella's case we can't afford to wait.
As a family we try remain positive and Ella has a strong bond with her younger sister Mia who is nine. The impact on the whole family can be very stressful at times but we will always strive to find the very best healthcare for our children and we believe you can help us do this.
Thank you so much for taking the time to read this, please share with as many people as you can. Over the coming weeks and months we intend to organise fundraising events and you can follow these onhttps://www.facebook.com/ellavbt/ https://twitter.com/VbtElla https://www.instagram.com/ella_vbt/?hl=en
We'd love you to follow these, share the links and tell everyone in your life about Ella's story.
All money raised will be put towards the cost of Ella’s life changing surgery and the associated costs. In the event that we raise more money than is required we will donate to charities associated with Ella's conditions. If the option for VBT ever becomes unavailable to Ella all donations will be refunded.
We are extremely grateful for any donation you are able to give, no matter how small. You’re helping to make our dream for Ella become a reality. Like any parent, we just want the best for our children and with your donations we can make this happen for our baby girl xx
Thank you Ian, Sarah, Ella & Mia x