Life changing surgery
Donation protected
My name is Taylor Barlow. I am 23 years old. I have Vascular Ehlers Danlos Syndrome. It is a rare, debilitating genetic condition with no cure. There are only 241 genetically confirmed cases in the UK.
I have a severe risk of organ rupture and internal bleeding. This condition means I suffer multiple dislocations daily and experience chronic pain. Other complications are cardiac issues, bladder problems as well as gastrointestinal difficulties. I take 35 tablets a day, that have horrible side effects. Things can get really awkward when I have to self-catheterise and my shoulder dislocates at the same time!
I’m looking to raise £100,000 for a series of ongoing operations and procedures that will give me the opportunity to live a reasonably normal life. I am unable to work due to my health and my doctors have told me that until my health significantly improves they will not be able to declare me fit for work. My condition is deteriorating, however, my goal of having a fairly normal life is feeling further and further away. EDS is rare and the specific inpatient rehabilitation I need is not available on the NHS. My greatest wish in life is to be able to study and get a job to support myself and have some independence. Once my heart surgery is done I can start my inpatient rehabilitation where I can have shoulder stability surgery, bladder surgery and spinal surgery. I have recently had a tear in my stomach which lead to a haemorrhage that required a blood transfusion. My right kidney has gone into kidney failure that will eventually require a transplant. As my illness is incurable, I may need surgery throughout my life.
I have had to put my whole life on hold due to my illness. I have missed out on so many opportunities and events, I started studying human science with a plan to continue onto medicine but had to stop due to health. I lost a lot of friends along the way. What I want more than anything now is to start the process of operations so I have a chance to get my life back and live the life of a normal 23-year-old.
Any help you can give me to achieve this would be life-changing and I will be extremely grateful forever.
I have a severe risk of organ rupture and internal bleeding. This condition means I suffer multiple dislocations daily and experience chronic pain. Other complications are cardiac issues, bladder problems as well as gastrointestinal difficulties. I take 35 tablets a day, that have horrible side effects. Things can get really awkward when I have to self-catheterise and my shoulder dislocates at the same time!
I’m looking to raise £100,000 for a series of ongoing operations and procedures that will give me the opportunity to live a reasonably normal life. I am unable to work due to my health and my doctors have told me that until my health significantly improves they will not be able to declare me fit for work. My condition is deteriorating, however, my goal of having a fairly normal life is feeling further and further away. EDS is rare and the specific inpatient rehabilitation I need is not available on the NHS. My greatest wish in life is to be able to study and get a job to support myself and have some independence. Once my heart surgery is done I can start my inpatient rehabilitation where I can have shoulder stability surgery, bladder surgery and spinal surgery. I have recently had a tear in my stomach which lead to a haemorrhage that required a blood transfusion. My right kidney has gone into kidney failure that will eventually require a transplant. As my illness is incurable, I may need surgery throughout my life.
I have had to put my whole life on hold due to my illness. I have missed out on so many opportunities and events, I started studying human science with a plan to continue onto medicine but had to stop due to health. I lost a lot of friends along the way. What I want more than anything now is to start the process of operations so I have a chance to get my life back and live the life of a normal 23-year-old.
Any help you can give me to achieve this would be life-changing and I will be extremely grateful forever.
Organizer
Taylor Barlow
Organizer
