We recently found out that our niece Avie (who lives in Crudwell) has Scoliosis and needs urgent surgery within the next few months. Our family is taking part in different fund raising events to help fund her surgery. This includes a few local events and Gaz taking part in a huge running challenge again.
We just wanted to raise awareness and funding by publicising as much as possible.
Please find below the information from my sister and all the links to support.
Ellen and Gaz (Follyfield).
Hello, my name is Avie David, I’m 14 years old and I live in Crudwell (my Auntie Ellen and her family live at 31 Follyfield in Hankerton). I was recently diagnosed with Scoliosis which is a curvature of the spine and I’m in a race against time to get life changing surgery in America.
My curve is already classed as severe and is increasing and rotating. If left, my rib cage will start to push against my heart and lungs and could cause me a lot of pain. My only option in the UK is to have my spine fused with screws and a metal rod, which would severely affect my day-to-day movement and I would lose all flexibility in the lumbar (lower) spine. I will also likely need further fusions in the future due to the high likelihood that I will experience disc degenerative disease or arthritis in the areas above and below the fused area, which could end with me needing to be fused to my pelvis.
I don’t want this to be my future. Luckily, I have been accepted by a Children’s Hospital in America who offer a different surgery called Vertebral Body Tethering (VBT) which uses a tether instead of a metal rod. It is a far less invasive surgery and will allow me to have full flexibility in my spine. The NHS are currently doing a clinical trial on this surgery but by the time it might be available on the NHS it will be too late for me.
We are now in a race to get this surgery in America to give me the brightest future possible. But we need your help!
My parents are starting to fundraise like mad and have a few local events happening that I hope you will consider supporting…
- CRUDWELL EASTER TRAIL – A lovely opportunity over the Easter weekend to have a wander around Crudwell village spotting eggs and gathering letters that make up an easter themed word. Trail maps will be on sale and include an Easter treat for each child and a chance to win a large Easter egg.
- PRIORY PIZZA ON THE ROAD – We have arranged for the Priory inn, Tetbury, to come and serve takeaway pizzas and Krispy Kreme donuts at Crudwell Village Hall car park on Good Friday, 2nd They will very kindly give us 10% of the profit they make on the night.
- RAFFLE/ONLINE AUCTION – We are arranging a raffle or online auction, so if anyone is able to donate anything, we would be so incredibly grateful. Please contact us at thedavidfive@gmail.com
- SPONSORSHIP – My Dad is doing a sponsored “I’ve got your back” 30/30 challenge where for 30 days he will carry 30kg in the form of a weighted backpack. He will be able to put the backpack down at the end of each day and walk away, but Avie cannot walk away from her condition. He will be doing this at work where he is a secondary school teacher but you might also spot him around the village! Then in October, my Uncle Gaz from Follyfield in Hankerton is taking part in the Atlantic Coast Challenge where he is going to run 3 coastal trail marathons in 3 days!! Serious heroes to me!
For my full story and to help me get to America, please visit my page at https://gofund.me/df9f4477
I also have a facebook page which will have all of the details of upcoming fundraising events and how you can support me. https://www.facebook.com/Fixing-Avies-Wonky-Spine-109688177863991
I hope you will consider me and my wonky back a worthwhile cause! xx
Hankerton Village 