My daughter Ciara was diagnosed with Ehlers Danlos Syndrome ( EDS) in early 2015 at age 13. Her young life is now consumed with pain. Gone are her fun days of dancing, cycling, trampolining and attending school like a normal teenager.
Since her EDS diagnosis she has since been diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTs). As a result of these conditions Ciara's life has been severely impacted by chronic pain, partial dislocations of her joints, chronic fatigue, heart irregularities, gastro complications and headaches. Unfortunately these are just a few of the symptoms she experiences daily. There is no cure for this condition only management.
Currently, Ireland does not have an EDS specialist, In fact knowledge of this condition is minimal as is of the co morbid conditions that exist alongside it. Those suffering in Ireland are often left with no choice but to seek expertise outside their country.
Since we started this fundraising campaign in 2016, Ciara has since being diagnosed with more serious complex issues, Craniocervical and Atlantoaxial Instability and Chiari Malformation.. These were diagnosed when she underwent an Upright MRI in London due to her symptoms.
The further updates on this page details our journey to seek answers to get care for Ciara. And finally getting the news that she needed Neuro surgery to improve and save her life.
The purpose of this campaign is to raise funds for Ciara’s surgery in Barcelona on March 2018, and the associated expenses and her recovery . Unfortunately we know this will not be Ciara’s last surgery.
Both Ciara and I would be very grateful if you could support us. Getting Ciara the surgery now is imperative to her long term prognosis.