This short documentary shows my daughter, Beth, five years ago...
She was, even then, living with a rare debilitating, neurological illness, Kleine-Levin Syndrome (KLS) , also known as Sleeping Beauty Syndrome, in the popular media, which she had developed at the age of 16 years old. Even through this, during her 'well' periods she worked hard to raise awareness and help others living with this life changing illness.
Little did we know that whilst she slept and was mainly bed bound the genetic illness that we were unaware she was carrying was causing massive deterioration and damage to her body.
It was three years ago, in 2016, six years after first developing KLS, that this damage became apparent and we finally started to find answers to the severe and serious symptoms that she had developed.
Beth was formerly diagnosed with Hypermobile Ehlers Danlos Syndome (hEDS) in June 2016.
Ehlers -Danlos Syndrome is an inherited connective tissue disorder that, in short, means Beth's collagen is faulty. Collagen is the glue that holds our bodies together. It is found throughout the entire body and in every organ and so EDS can have a devastating affect on almost every system in the body. It affects each person differently.
For Beth, it means severe daily pain, limited mobility, frequent joint subluxations, prolapses,severe digestive problems and now, most seriously, instability of her spine.
CRANIOCERVICAL INSTABILITY AND ATLANTOAXIAL INSTABILITY
Alongside instability and movement in her lower back which is still being investigating Beth has been diagnosed with Craniocervical instability (CCI) and Atlantoaxial instability (AAI).
Basically, her neck is unstable and is at risk of dislocating.
Any small jarring or movement could dislocate or dangerously move her spine causing injury to the spinal chord and nervous system.
Also, the arteries that are in this area and feed the brain are at risk of kinking and compression which would lead to a stroke. Infact, Beth has already suffered from at least one suspected TIA ( mini stroke) and with hindsight we don’t believe this to be her first.
Beth’s neck urgently needs stabilising. She currently wears a hard neck brace to help minimise these risks as much as this allows but this is not a cure or a permanent fix.
The only way way to stabilise her neck is surgery. The surgery she has been recommended as needing is Occipitocervical posterior fusion stabilisation with intraoperative reduction ( traction).
It is suspected that Beth also has intracranial hypertension which again can have devastating repercussions. She will be undergoing tests for this in the near future.
She also has cerebellar tonsill ectopia, which means that, for some reason, the bottom of the brain is descending/being pushed down into the spinal chord. This can be caused by both craniocervical instability or intercranial hypertension, amongst other things. Further tests will hopefully determine the cause and be corrected.
Having EDS makes this surgery, and indeed any surgery, more complex. The connective tissue doesn’t act or heal the same way and makes any procedure and even the after care much more complex and risky.
A lack of provisions in the UK for EDS related neurosurgeries means that Beth’s only option is to fund this care and travel to one of the world leading experts in EDS related neurosurgeries.
We we have been recommended and been in touch with a Spanish Doctor who we have every faith in and who we believe that Beth will be in safe hands with.
We are hoping to move forward with this and travel to Barcelona in the near future.
BETH’ LIFE AT PRESENT
During the last three years there has been a dramatic deterioration in Beth’s health.
She is now 25 years old. She has gone from a fit and active young woman, who enjoyed sports and keeping fit, participated in many hobbies, had an active social life and had high hopes and dreams for her career and future, to someone who uses a wheelchair and finds even spending any length of time sitting up tiring and painful. She is in severe and constant pain, needing constant heavy pain relief and has a whole host of other symptoms that increasingly leave her feeling very ill and bed bound, unable to even carry out the most basic of tasks.
The longer she is left without treatment, the more she will deteriorate and the lower the chance of a good recovery.
We are completely overwhelmed with not only the severity of her condition and the daily risks she faces but with the daunting task of raising such a huge sum of money in order to save her life.
But we have no choice, we HAVE to raise this money and save my beautiful and precious girl.
But we cannot do this alone. We need your help. We need you!
Please, please, please help us.
Please share this campaign far and wide, on social media, with your friends and family, with anyone and everyone.
Please consider organising a fundraising event.
Please ask businesses or your boss if they will donate or even donate an item for auction.
We need this out there. I know we can do this together.
We have to do this.
Please feel free to contact me with any ideas you may have to promote this campaign or raise funds.
Thank you all so much.
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