The purpose of this post is primarily to inform. If you are moved to donate, thank you.
I never heard of Ehlers Danlos Syndrome, until recently. Now I know two people coping with it. My friend’s daughter in England and a local family from Cape May.
On 7th August 2014, Laura Sylvester was diagnosed with a rare genetic disease called Ehlers Danlos Syndrome (EDS) with PoTS (Postural Tachycardia Syndrome). EDS causes the connective tissue throughout her body to be extremely stretchy and easily breakable – there is no cure for it. Over time, the muscles in her neck have become very unstable, which has further led to dislocation/subluxation of her vertebrae, disruption of her spinal cord ligaments, and compression on her cerebellar tonsils and brain stem.
Suddenly her life was flipped upside down and this degenerative muscular condition caused her to deteriorate quickly, forcing her to postpone her Master’s degree at Imperial College, return home, and be cared for by my friends Jayne and Kevin, Laura’s parents.
Once an extremely sporty, sociable, positive and driven young woman, she has become tremendously vulnerable. In extreme pain, she wears a neck brace all day, and at constant risk of further damaging her brain stem, that would consequently cause her to stop breathing.
Laura is in desperate need of specialised EDS neurosurgery which will be done on 13th January 2016 in Washington D.C. There are few experts in the world who can do this. The total of the medical expenses, travel and recovery is very high. She NEEDs to raise at least £75,000 ($110,000) to fund this.
The surgery will create stability in her neck and stop the compression on the brain stem and cerebellar tonsils, essentially saving her life. This will enable her to carry on living her life as a normal 23-year-old, hopefully mostly pain-free and without the worry of causing further damage, which could otherwise prove fatal.
Even though the surgery will offer Laura the stability that she needs, unfortunately it comes at a cost of losing complete movement of her head and neck. Nevertheless, she is determined to adapt to this and begin fulfilling her dreams once again and resuming her Master’s degree.
Any amount of donations and support for this specialist neurosurgery will be so tremendously appreciated, not only by myself, but also her family and friends. Please do consider contributing to the first major stepping stone that Laura needs to live her life without fear.
Just to mention, my daughter has a slight case of EDS, and I believe a cousin has it more severely. My sister in law also has a connective tissue disease.
I am staying on top of her disease, as she has had spinal surgery, and shoulder surgery. Her skin did not heal well. What would have been tiny stitch marks, are now larger and stretched out . These young people have to be kept in our prayers at all times.
Oh my, Donna, thank you for sharing that. I am just getting up to speed with Laura’s condition and plans for surgery in DC next month.
It truly seems like a struggle with no easy solution for anyone involved. Thanks for taking the time to read and comment.
Thank you for sending me this blog. Now I don’t feel so alone.