She has been sick her whole life but no doctor was able to find what she has until this year when her life changed rapidly from being an independent and outgoing young women to not being able to leave the house for a whole year.
Daisy has EDS, a life threatening connective tissue disorder that affects all tissues, arteries and internal organs making them extremely fragile. On top she has been diagnosed with hypermobility, POTS, Dysautonomia and CCI.
Her main issue is Atlantoaxial Instability and Craniocervical Instability, which means the top of her spine is unstable and compressing the brain stem which causes immense pain, swallowing issues, brain fog, headaches, dizziness, breathing issues and having to stay in bed 80 % of the day.
Daisy urgently needs life saving surgery to fuse her skull to the top of her spine. As her symptoms are so bad her only chance is a fusion operation. Without it she has a high risk of being paralysed.
The fusion operation for EDS patients is only done by 5 specialists world wide and not available on the NHS. We found a specialist in Spain who is concerned and recommends a surgery as soon as possible as her symptoms worsen every day and can become life threatening really quickly.
Any amount you can donate towards the cost of her surgery and medical bills would be so gratefully received.
Thank you so much for taking the time to read this and consider the part you can play in saving Daisy´s life.
- Viola Dreyling
- Helmut und Doris Hartig
Organizer and beneficiary
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