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Marks insane 24hour cycling challenge for Taylor

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My amazing Dad is going to cycle non stop for 24 hours covering around 300 miles going all around the county of Cornwall! He’s doing this insane challenge in order to try and raise the funds I need for a surgery. I have Vascular Ehlers Danlos Syndrome. This is a life threatening genetic condition that means my body produces incredibly fragile collagen. I am at constant risk of internal bleeding. It affects all of my internal organs and makes them function ineffectively, causing a list of problems, too long to list in full entirety here but they include frequent dislocations, bladder, gastrological and gynecologic issues. I get huge bruises that are extremely painful. Daily, my condition is very difficult to manage as I am in pain all the time. I take many different medications just to try and function with some normality. Life is challenging enough as it is and now my latest scan has shown two masses on my brain and four masses in my back. These are not life threatening but they are causing, in addition to the vEDS, even further life restricting and limiting symptoms. The ones in my back cause further chronic pain and the two on my brain cause severe problems with my mood and give me balance problems. This leads to me falling often which causes further dislocations. I’m also much weaker on one side of my body and have a tremor in my hand. The masses are also causing me mood problems, I have severe depression and anxiety. Because the masses are there, medication doesn’t work very well. It’s simply acting as a sticking plaster over a bullet wound. It’s very lonely and challenging and it’s my dream to simply have a chance at being able to work, to leave the house, to make connections and find purpose. My family and I are trying to raise the money for a specialised surgery to remove these masses and for further ongoing treatments that’ll enable me to have a better shot at life. This will give me the best chance of stopping the symptoms that are so life limiting. I deeply appreciate any support you might be able to give, whether it’s a donation of any amount or a share. Myself and my family thank you all from the bottom of our hearts. Ride details: This will be done sometime in September 2022, when the roads in Cornwall should be a little quieter. We will look for a weather window and pick the best day.


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Donations 

  • Leroy Phipps
    • £30
    • 2 yrs
  • Anonymous
    • £5
    • 2 yrs
  • Stella Burch
    • £20
    • 2 yrs
  • Helen Sloman
    • £10
    • 2 yrs
  • Helen Sloman
    • £10
    • 2 yrs
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Fundraising team: Team fundraiser (2)

Taylor Barlow
Organizer
Lisa Barlow
Team member

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