SPONSOR & DONATE TOWARDS:
Hospital Fees: £75,000 (+)
Surgeon Fees: £15,000 (+)
Hotel (3 weeks stay): £4000
Return Flights: £3000
Vision Therapy (12 sessions/24 hours): £3000
Physiotherapy (12 sessions/12 hours: £1500
Laura Sylvester, 24 and studying for a Masters in Petroleum Geoscience at Imperial College London sponsored by PESGB, is in urgent need in medical crowdfunding a total of £300,000. She has currently fundraised just over £209,000 on her ‘YouCaring’ site since December 2015 and is in critical need of your help and support to fund £100,000 for her upcoming CT Angiogram, possible 5th neurosurgery and other medical treatment in the U.S.A in April 2017. Since January 2016, she has gone through a total of 4 major neurosurgeries (three of which were life-saving) Washington D.C., U.S.A. Most recently, lifesaving brain surgery in June 2016 at the University of Virginia by a world-leading neurovascular surgeon which allowed her to go from being wheelchair bound to walking again.
After graduating from the University of Leeds with BSc (Hons) Geological Sciences in 2014 and about to begin her Master’s degree, Laura was diagnosed with a rare genetic disease called Ehlers Danlos Syndrome (EDS) along with many other co-morbidities one of them being PoTS (Postural Orthostatic Tachycardia Syndrome). EDS causes the connective tissue (collagen) throughout her body to be extremely stretchy and easily breakable – there is no cure and there are currently no specialist EDS neurosurgeons in the U.K. or Europe. Unfortunately, during her MSc Thesis Project, this degenerative muscular condition caused her to deteriorate quickly causing her neck and spine to become extremely unstable. Laura was diagnosed with severe Cervical Medullary Syndrome, Craniocervical and Atlantoaxial Instability (dislocation/subluxation of her skull to C2 vertebrae), Chiari Malformation (brain sinking through her skull), Syringomyelia (fluid in spinal cord destroying nerves), disruption of her spinal cord ligaments and compression on her brain stem. This became life-threatening whilst she was suffering from extreme pain and having to wear a neck brace to prevent any further damage. This forced her to take a “pause” her MSc degree at Imperial College London.
Between January and April 2016, Laura underwent 3 lifesaving complex neurosurgeries in Washington D.C. by one of the few Ehlers-Danlos Syndrome neurosurgeons in the world who has the surgical skills and expertise: (1) Craniocervical Fusion, Chiari Decompression & Re-alignment of her skull, 13th January 2016 (2) Tethered Cord Release and L1-L3 Fusion, 17th February 2016 (3) Anterior Corpectomy Discectomy and Fusion C5-C6, 12th April 2016.
At the end of April 2016, Laura was faced with another life-threatening diagnosis: Cerebral Venous Sinus Thrombosis – also known as CVST Brain Clot. This is a rare blood clot in the brain that affects only 5 in 1 million people per year. Sadly, 1 of her 3 major veins in her brain (Left Transverse Sinus Vein) had completely collapsed on top of the brain clot and was too dangerous to be fixed due to the high risk of a brain haemorrhage. This prevented blood to drain from Laura’s brain causing her to suffer from Intracranial Hypertension (high fluid pressures in the brain) and debilitating neurological symptoms making her wheelchair bound (loss of peripheral vision, pressure headaches, numbness in both arms and legs etc.). On 21st June 2016, Laura underwent her 4th lifesaving brain surgery at the University of Virginia where they inserted 3 stents into her brain to prevent further collapse of her other major veins. Laura was the 54th EDS patient in the world to undergo this pioneering neurosurgery and the longevity and risks are still unknown. Overall, the surgery was a success and for the first time in years allowed Laura to feel relief from chronic neurological symptoms, the greatest being having sensation restored to both legs and feet that has allowed her to re-learn to walk againwhich she thought would never be possible.
After 8 months of undergoing specialist medical treatment in the USA, Laura returned home with her mother Jayne in August 2016. Since returning to the UK, Laura has been committed to rehabilitation and recovery from all 4 neurosurgeries as well as devoting her time to being an EDS Patient Advocate approaching the department of health to implement change. Unfortunately, currently she is suffering from mini-strokes and pressure headaches concerning the specialists. Laura needs to fly back to the USA to undergo a specialised CT Angiogram at the University of Virginia on 11th April 2017 to investigate the causes of these symptoms. It is very likely that Laura will need further pioneering procedures including brain stent, lumbar puncture and lumbar shunt surgeries to reduce the high fluid pressure in her brain. If she does not have these surgeries, the high pressures will cause her to suffer permanent brain and neurological damages. Laura will also receive specialist EDS physiotherapy and vision therapy in Washington D.C. during her stay to help rehabilitate from her vision and brain damages she’s suffered from her previous neurosurgeries till the 22nd April 2017.
As you can understand, this has caused medical costs to raise considerably, hence Laura and her family are in desperate need to raise at least £100,000 for her upcoming procedures in April 2017.
Laura is still focussed and determined on finishing her MSc at Imperial College in autumn 2017 and MSc Thesis Project at Impact Oil & Gas Ltd to become an employed Petroleum Geoscientist. She also is focussed on pursuing her patient advocacy role being recently given the opportunity to be ‘Education Advisor’ for The Ehlers-Danlos Society (international) as well as an inspiration via her blog ‘Mind, Body & EDS’ to those who suffer from EDS to never give up!