Ali's Fight For Fusion
Donation protected
This is the story of my wonderfully strong and caring girlfriend Alison Turner, or Ali as we know her.
Ali was a funny, vibrant and compassionate character who worked with vulnerable children and families throughout the North West of England. Ali enjoyed nothing more than looking after others.
Despite her zest for life, Ali has been plagued by illness from a young age, with gastrointestinal issues along with many joint dislocations. She endured 7 years of invasive tests with no firm answers.
In August 2015, at the age of 31, Ali was finally diagnosed with Ehlers-Danlos Syndrome type 3, which is a connective tissue disorder. This is multi systemic in nature and can affect musculo-skeletal, cardiovascular (blood vessels and heart), gut, neurological and urinary systems. In later months she was diagnosed with Postural Orthostatic Tachycardia Syndrome, this is an abnormal increase of heart rate, in itself is a debilitating and life changing condition. For Ali this means being unable to regulate body temperature, severe nausea, palpitations, insomnia and tremors.
Over the past 2 years, Alison is a shadow of her former self due to unrelenting symptoms. Hideous headaches, frightful facial pain and fatigue has left Alison, at times, bed bound for days. Stroke like symptoms and muscle wastage means that she is too weak to perform the simplest of daily tasks.
The campaign was originally set up to fund a life saving trip to Georgetown University hospital so that Ali could receive life saving and life changing surgery under the watchful eye of neurosurgeon Dr Sandhu (This surgery is not available to EDS patients in the UK)
Ali underwent posterior fusion from C0 (skull) to C2. Due to the complexities of Ehlers Danlos.
The surgery took place on the 13th September 2017, but unfortunately we did not meet the £104,000 target for this surgery, falling just over £20,000 short. The money that is donated in future will go towards paying the rest of the costs of the operation and additional aftercare and scans which Ali will need to ensure the proceedure is a success.
Despite the surgery, Ali still battles a long and slow recovery period and the prospect of encountering future procedures.
Ali is a much loved daughter, doting sister, friend to many and the perfect girlfriend and the strongest person I have ever met. Ali has had to leave the job she cherished. She is currently unable to do the things she once loved and the things that made her….Ali.
Everyday Alison is still plagued with debilitating and unimaginable pain, her symptoms are affecting every bodily function.
Despite Alison’s plight, her quest is not only to raise money but awareness of Ehlers Danlos and its comorbid conditions.
We would be eternally grateful for donations or fundraising events you could host to help Ali during her recovery period to help her recoup the money owed for the proceedure.
Ali was a funny, vibrant and compassionate character who worked with vulnerable children and families throughout the North West of England. Ali enjoyed nothing more than looking after others.
Despite her zest for life, Ali has been plagued by illness from a young age, with gastrointestinal issues along with many joint dislocations. She endured 7 years of invasive tests with no firm answers.
In August 2015, at the age of 31, Ali was finally diagnosed with Ehlers-Danlos Syndrome type 3, which is a connective tissue disorder. This is multi systemic in nature and can affect musculo-skeletal, cardiovascular (blood vessels and heart), gut, neurological and urinary systems. In later months she was diagnosed with Postural Orthostatic Tachycardia Syndrome, this is an abnormal increase of heart rate, in itself is a debilitating and life changing condition. For Ali this means being unable to regulate body temperature, severe nausea, palpitations, insomnia and tremors.
Over the past 2 years, Alison is a shadow of her former self due to unrelenting symptoms. Hideous headaches, frightful facial pain and fatigue has left Alison, at times, bed bound for days. Stroke like symptoms and muscle wastage means that she is too weak to perform the simplest of daily tasks.
The campaign was originally set up to fund a life saving trip to Georgetown University hospital so that Ali could receive life saving and life changing surgery under the watchful eye of neurosurgeon Dr Sandhu (This surgery is not available to EDS patients in the UK)
Ali underwent posterior fusion from C0 (skull) to C2. Due to the complexities of Ehlers Danlos.
The surgery took place on the 13th September 2017, but unfortunately we did not meet the £104,000 target for this surgery, falling just over £20,000 short. The money that is donated in future will go towards paying the rest of the costs of the operation and additional aftercare and scans which Ali will need to ensure the proceedure is a success.
Despite the surgery, Ali still battles a long and slow recovery period and the prospect of encountering future procedures.
Ali is a much loved daughter, doting sister, friend to many and the perfect girlfriend and the strongest person I have ever met. Ali has had to leave the job she cherished. She is currently unable to do the things she once loved and the things that made her….Ali.
Everyday Alison is still plagued with debilitating and unimaginable pain, her symptoms are affecting every bodily function.
Despite Alison’s plight, her quest is not only to raise money but awareness of Ehlers Danlos and its comorbid conditions.
We would be eternally grateful for donations or fundraising events you could host to help Ali during her recovery period to help her recoup the money owed for the proceedure.
Organizer
Nick Zabel
Organizer