Help Save Ruby’s Life
Ruby Mavis Pearl Alladin is only 24 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 has Ehlers Danlos syndrome. In combination with ME /CFS, chronic fatigue syndrome, the 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. As a result, the brainstem is trapped and neurological damage and a range of neurological complaints occur. This condition is progressive. Her situation is therefore getting worse every day.
Unfortunately, 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 for a ‘normal’ life is a major operation in which the upper neck vertebrae are artificially secured to support her skull. Without this surgery, Ruby will die a slow and painful death.
Worldwide there are only 4 neurosurgeons who can successfully operate on this condition. Dr. Gilete from the Teknon Medical Center in Barcelona is one of them. He has extensively investigated Ruby and based on sitting MRI’s, CT scans and a CINE radiology established the definitive diagnosis. She is a good candidate for the operation and is scheduled to go by the end of February. But we have to pay for it ourselves.
TOTAL COSTS +/- € 85.000,-.
Rolien Scheepbouwer, Ruby’s single mother, has spent all these years looking for a cause and appropriate treatment, by herself. Every day is an emotional, financial and medical battle. She doesn’t last that much longer. An operation is 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