Woman whose brain is 'slipping down her spine' is raising funds for innovative treatment
A 29-year-old woman whose rare condition is causing her brain to push down towards her spine is trying to raise money for specialist treatment in the hopes it will give her a chance at a normal life.
Emily Balfour was first alerted to her health issues at the age of 14, when an ice-skating accident led to a diagnosis of Ehlers-Danlos syndrome (EDS), which is a group of connective tissue disorders which can affect the body’s joints, ligaments and tissues.
Alongside this, she was diagnosed with craniocervical instability (CCI), which impacts the stability of the junction between the skull and upper spine.
For years, the UK-based woman has been attempting to fundraise to receive a life-changing innovative procedure only available in the US, but £200,000 ($267,828) still stands between her and the chance of a pain-free life.
Advert
The costs involved mean she is still unable to access the procedures she hopes could improve her quality of life, and for Emily, the difference treatment could make is difficult to put into words.
Speaking to UNILAD Tech, she said: “It means the difference between having a life and not having a life, having a future and not having a future.”
While she waits, her health continues to decline as Emily explained: “I’m honestly just so, so desperate to live. I have a lot of career aspirations and things that I have been trying to drag myself towards. It’s been like hell trying to do it, but I have been slowly sort of crawling through… and for me, the biggest blockade is just the physical, neurological, and pain symptoms.”
In recent years, Emily has faced new diagnoses, including thoracic outlet syndrome and tethered cord syndrome.
Thoracic outlet syndrome involves the compression of nerves and blood vessels between the collarbone and first rib, potentially causing pain, numbness and weakness in the arms and hands.
For Emily, the condition has particularly affected her left arm. “There were periods where my arm just went completely dead. It looked like a dead person’s arm, really purple and swollen, completely paralysed, like a dead weight.”
To mitigate the pain she is in, Emily has been relying on increasingly strong pain relief, including a morphine patch, but has admitted that even the maximum medication available to her is doing little to control her symptoms.
She said: “The pain specialists have given me the maximum pain relief they can. It still doesn’t touch the pain for the most part.”
Emily added that without the medication, she would struggle to get out of bed or manage even the most basic daily activities, but she is hoping specialist treatment could help change that.
Innovative health tech could be life-changing
Emily is seeking funds to undergo a Percutaneous Implantation of the Craniocervical Junction Ligaments (PICL) procedure at the Centeno-Schultz Clinic in Colorado, which would involve a surgeon injecting regenerative orthobiologics, such as blood, fat, or bone marrow, directly into the ligaments of the head and neck.
This would stabilize the junction between the skull and the upper neck, treating the part of Emily’s neck where her brain has herniated and is dangerously descending into the upper spinal canal.
The 29-year-old shared that she has dreams of pursuing a career helping other people but without intervention, her symptoms will continue to worsen, while the long-term consequences of relying on powerful pain medication become increasingly concerning.
Emily added: “I’m not aspiring for some extraordinary life or something amazing to happen to me. My big, huge dream would just be to have a vaguely ordinary existence.”
In March 2026, the issue was raised in a British parliamentary debate, where MP Josh Newbury shared the experiences of constituents living with EDS and craniocervical instability, which Emily hopes will make more people aware of the conditions and the challenges faced by patients.
Emily is now fundraising through two platforms, with her GoFundMe page aimed at supporters in the UK and Europe and another, Help Hope Live, for people in the US.
People can also follow Emily’s journey and find further information through her social media pages: www.instagram.com/fight4emily
