Help Save Ruby’s Life
Ruby Mavis Pearl Alladin is only 25 years old and has been sick for almost 12 years. That is half of her young life! Due to severe nerve pain and extreme exhaustion, she was forced to spend most of those years in her bed. Lonely and alone in a dark room because she cannot handle any noise or light. She was unable to finish school, had to stop her ballet classes at the National Ballet Academy and lost all of her friends. An unbearable existence for a young woman!
After 12 years, hundreds of doctors and specialists, countless medical tests, misdiagnoses, incorrect treatments, misunderstanding and opposition of organizations and agencies, it appears that Ruby was born with Ehlers Danlos syndrome and Tethered Cord syndrome.
*TCS is a innate condition a condition in which the spinal cord is attached to structures in the lower back and prevents the spinal cord from moving freely. This not only results in scoliosis, but also many neurological complaints and possible nerve damage.
In combination with ME /CFS, chronic fatigue syndrome, her high neck vertebrae have become unstable. Her body does not produce enough connective tissue, so her neck and ligaments are not strong enough to support her skull properly. Her vertebrae are also very small and thin which causes a compression of C0 to C2. As a result, the brainstem and jugularis are being compressed and neurological damage and a range of neurological painfull complaints occur. This condition is progressive. Her situation is getting worse every day.
Unfortunately, all these conditions and specifically Craniocervical instability and Atlantoaxial instability (CCI /AAI) are still virtually unknown in the Netherlands and therefore no tests can be done, no diagnosis can be made and no treatment is available. Another consequence is that examinations and treatments abroad, where there is help, are not reimbursed and we have to pay for everything ourselves.
The only chance to have a somewhat ‘normal’ life is two major operations in which the upper neck vertebrae are artificially secured to support her skull and one where her tethered cord will be released. Without these surgeries Ruby does not have any perspective and is condemned to a painful lonely life in complete isolation.
Worldwide there are only 4 neurosurgeons who can successfully operate these conditions. One of them is in Barcelona. In November 2019 he said she was the perfect candidate for surgery, but in July 2020 he suddenly decided, for no apparent reason, to not operate on her. This was a huge shock for Ruby but she is determent to get her life back and knows that surgery is the only option.
After having consulted 3 American neurosurgeons to get a second opinion, we now know that there is a lot more going on then just instable vertebrae. That that is merely the result of the conditions that she was born with. The neurosurgeon in the USA who wants to help her is very well known. He has over 30 years of experience and knowledge and we trust his diagnosis completely.
Unfortunately the costs are sky high. Each operation costs around € 85.000,-. We have to fly business class because Ruby is not able to sit up straight for longer than 5 minutes so she needs to travel lying down. The tickets are around € 7.000,- for the both of us. We have to stay in the US for at least 6 to 10 weeks, also due to possible quarantine. And we need a buffer for unforseen costs and to travel business class to the US again after 6 months for her check up.
TOTAL COSTS +/- € 200.000,-
With the last crowdfunding we raised 90K. After having been to Barcelona and spending money on travel, hospital tests and second opinions, we have € 84.770,- left. This means we still need to raise a whopping € 115.000,- . An incredible amount of money but it is the only possibility for Ruby to get her life back and try to make something out of it. I wish her that more than ever but I need your help to make it happen!
Rolien Scheepbouwer, Ruby’s single mother, has spent all these years looking for a cause and appropriate treatment, by herself. Every day has been a emotional, financial and medical battle. She doesn’t last that much longer. The surgeries are therefore not only of vital importance to Ruby, but also to her mother. They both want to be able to live and enjoy a carefree life again instead of having to fight and survive every day. That is no life.
Please help us with a DONATION and by SHARING this crowdfunding within your network. Ruby is very keen to be able to lead an independent carefree life and make her dreams come true. Just like everyone else.
Many thanks in advance!
We really appreciate all help and donations! 🙏🙏🙏
Rolien and Ruby
Triodos Bank account: NL06 TRIO 0338630228
SAVE RUBY’S LIFE FOUNDATION, Amsterdamby