Mandy was an active and outgoing person who would do anything for others. She had two jobs, both supporting local young people, and was studying towards a Master's Degree in Counselling. She hoped that this would allow her to further increase the positive impact she could have on the lives of people who were struggling in her community.
In October 2014 she started experiencing a number of symptoms including unrelenting, severe headaches and debilitating vertigo which prevent her from standing for any length of time, forcing her to give up her work and study. Her symptoms worsened over the next 18 months as she developed Postural Tachycardia Syndrome (POTS), a condition which causes her heart rate to more than double whenever she stands up, and problems regulating her blood pressure. She was diagnosed by a specialist Rheumatologist with Ehlers-Danlos Syndrome (EDS), a rare and incurable genetic disorder which causes the production of faulty collagen in her body, making her joints and other connective tissue throughout her body too stretchy. After paying privately to be scanned in the UK's only upright MRI scanner it was also discovered that the stretchy ligaments in her neck were leaving her spine and skull unstable causing her vertebrae to dislocate and crush her brain stem and spinal cord causing irreversible damage and the daily possibility of paralysis and even death.
Over the last two years Mandy has gone from a full and rewarding life to an lonely, isolating one, unable to leave the house or perform the normal tasks of daily living and forced to wear a neck brace. She suffers daily from:
- Constant and severe neck, head, eye and shoulder pain caused by spinal instability called Atlantoaxial Instability and Craniocervical Instability,
- Heart arrhythmia, tachycardia and irregular blood pressure preventing her from standing
- An array of neurological symptoms such as memory loss, tremors and numbness
- Difficulty regulating body temperature and other autonomic bodily functions due to compression of her brain stem
In order to prevent further damage to her brain stem and try to correct some of the problems she already faces Mandy urgently needs surgery to fuse her skull and vertebrae together. This will stop her skull sliding too far and stabilise her vertebrae so they can no longer dislocate with every movement, both of which are currently compressing her brain stem. This is a very complicated surgery, which involves inserting screws through the bones which protect the spinal cord and brain and is made more complicated in Mandy due to her EDS. There are currently no EDS specialist neurosurgeons in the UK able to perform this operation.
Mandy's UK neurosergeon agrees that her only hope is to raise £60,000 to travel to Barcelona to have the operation performed. This surgery is life saving, the longer she goes without it the more she will decline and the consequences are extreme as total brain stem compression can cause death. It is very important to raise the funds before other serious side effects such as paralysis set in as she will no longer be a candidate for surgery.
The £60,000 raised will pay for:
- The surgery
- Pre-op scans
- Hospital stay including two nights in ICU
- Post-op scans
- All required medications during the stay
- Complications insurance
- Specialised accommodation for the duration of post-op care
"Her clinical status with regards to the cervicomedullary syndrome is advanced, hereby the reason to stress on the need of having surgery as soon as possible. Actually, we think that there is no chance of improvement without surgery, and probably her condition will only decline as time goes on." - Medical Report, Hospital Teknon, Barcelona
Your help will ensure that the rest of Mandy's life can be full of the things that make life worth living such as having much longed for children, spending time with friends and family and helping others.
We would love for you to be a part of Mandy's story and put a smile back onto her face.