Teenager with EDS Denied Financial Support for Neck Surgery

16-year-old Teenager Ciara Micks of Limerick, Ireland, tries to remain positive despite an unsettling situation regarding next steps to treat her EDS, Ehlers-Danlos Syndrome, reports Limerick Leader. Ciara deals with pain and discomfort every single day, and her family is fighting to give her a better quality life. Currently, next steps are to undergo an invasive neck surgery, but financial problems are halting the procedure from happening.

EDS is a rare condition that affects connective tissue. To learn more about it, click here.

It has forced Ciara to stay at home, avoid activity and undergo intense, consistent treatment. Currently, she has been dealing with pain, headaches, fatigue, insomnia, fainting, bladder discomfort and worst of all her instability of the cervix and atlantoaxial joint. This pain is caused by a dislocation of her spine and skull.

The next steps are to undergo neck surgery that would essentially fuse together her neck, leaving her unable to nod up and down, or left and right. Yet, this surgery will provide the relief she has been desperately needing over the years. The surgery needs to be done in Spain, as it’s not provided there in Ireland, and it will cost an upwards of 120,000 euros.

Currently, the Micks family has successfully raised half of those funds, an accomplishment in itself. Yet, that is not enough. The family has depleted their own personal savings attending to Ciara’s medical needs this last year, as well as depleting their friends and family options. So, they then applied for assistance from EU Cross Border Directive. The program allows patients in Europe to obtain healthcare options and assistance. So with some hope, the family submitted Ciara’s bid and story. To their frustration, it was denied.

While the family feels angry and slighted by the Directive, they will not stop at a simple “no” to get their teenager the help she needs. They will continue to fundraise as fast as they can, in hopes to reach the goal before Ciara’s level of pain and discomfort further progress.

If you’d like to donate to their cause, click here.

Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email

What are your thoughts on being a rare disease advocate? Share your stories, thoughts, and hopes with the Patient Worthy community!

Close Menu