Woman's brain is slipping down her spine

A 25-year-old who has been mostly bed bound by a painful condition that is causing her brain to slip down her spine is pleading for help to raise funds for lifesaving treatment in the US to stabilise her skeleton.

Desperate to raise the £200,000 she needs, Emily Balfour, from London, said she will eventually face permanent disability and is at risk of paralysis if she does not receive PICL, a procedure that injects stem cells into the spine through the back of the mouth.

An ice-skating accident at the age of 14 flagged the alarming conditions that cause Emily to now live with “relentless levels of pain”.

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She was diagnosed with Ehlers-Danlos syndromes (EDS), a collection of rare conditions affecting the connective tissues that make her joints unstable and prone to dislocation, as well as craniocervical instability (CCI). This means the area where her skull and spine meet is dangerously unstable.

Emily also has Chiari malformation, which means the lower part of her brain has herniated and is pushing down through the top of her spinal column. “My health is continuing to deteriorate but I still haven’t managed to raise enough money to get the treatment I need in America,” Emily said.

“It would be lifesaving for me and, unless I get the treatment, my life is on pause and stagnated, I’ve become largely bed bound. And this issue doesn’t just affect me, there are so many people with this condition who are struggling to get funds for treatment abroad. Money is the barrier for us being able to live our lives.”

In 2011, Emily was first diagnosed with EDS after an ice-skating accident resulted in a trip to the doctors. Once a sporty and active teen, Emily is now