Emily Balfour

We’re raising money for Emily, a generous and creative young woman whose life has been entirely transformed by a rare genetic condition. 

She lives with Ehlers-Danlos Syndrome (EDS), a connective tissue disorder that has led to a severe and life-altering complication called Craniocervical Instability (CCI). This means weakened ligaments in her neck can no longer properly support the base of her skull, compromising all the structures in that area and causing  part of the lower brain to fall through the base of her skull. As a result, she faces constant, agonising pain, memory loss, brain fog, migraines, vision problems, and severe fatigue. These symptoms are only worsening as time passes.

Despite this, Emily is resilient and determined to use her experiences of hardship to help others. She is training to become a psychotherapist, with the hope of supporting people through their own difficulties. However, she needs your support to give her the chance to build that future.

There is hope. Emily has been accepted for pioneering specialist treatment called PICLs at a clinic in Colorado. This treatment targets weakened ligaments with the aim of improving stability in her upper neck. For Emily, it offers hope of relief from debilitating symptoms and the chance to reclaim her life. It will also help protect against further deterioration.

It would truly be life-changing 

Unfortunately, the costs of Emily’s care far exceed what she can afford alone. Our overall fundraising goal is $200,000 to help fund PICL procedures, other associated treatments for her EDS-related complications, and the travel and accommodation needed to access this. Every donation brings her one step closer to the treatment she desperately needs.

Thank you so much for reading her story, and showing us she is not alone ❤️