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 18 months, 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.
Things have worsened in recent months, from an upright MRI scan Ali was found to have cranio cervical instability and atlanto axial instability from her skull to the second vertebrae in her spine. As a result of extreme measurements Ali now has brain stem compression which will progress and is irreversible once the damage has been done. She risks a full neck dislocation, which could lead to paralysis. Artery and spinal compression which could lead to instant death. Every day is a battle for survival.
Ali requires urgent lifesaving surgery which will be a posterior fusion from C0 (skull) to C2. Due to the complexities of Ehlers Danlos, this surgery holds some daunting risks but it is essential.
Currently the UK do not offer this surgery to patients with Ehlers Danlos, therefore Ali has had to seek advice from leading neurosurgeons overseas, who perform these operations for people with this rare condition.
Ali is hoping to undergo this major surgery under the care of Dr Gilete at hospital Teknon in Barcelona. She will be flying out to meet Dr Gilete, who will give a more detailed explanation of what the operation entails.
We now face the prospect of having to raise £55,000 for this life saving surgery. The money that is donated will go towards the cost of the operation and any aftercare required.
On particularly bad days Ali is forced to wear a hard cervical collar and various braces in order to steady her joints from dislocating. Although if you were to bump into her in the street, she would look as healthy as the next person as a consequence of this cruel ‘invisible’ affliction.
Ali is a much loved daughter, doting sister, friend to many and the perfect girlfriend and the strongest person I have ever met. This once proud and bubbly girl, has become a prisoner in her own home. 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 in debilitating and unimaginable pain her symptoms are affecting every bodily function. This is devastating for her family and those closest to her who are witness to this rapid decline. Most tragically unlike many women her age, at present Ali is unable to start the family she longs for, due to her untreated and ongoing medical difficulties , this breaks her heart on a daily basis.
Ali’s Fight For Fusion-DailyManchester.co.uk-Daily-News-Manchester-Day-And-Manchester-Evening-News-dailyn-news
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