The trauma for Katie started at 6 months when she required intensive therapies. At the age of 6 she required a major operation on her hips as she was no longer able to walk without them dislocating. She was put into a full body cast and developed involuntary whole body movements and could not keep still.
Her condition baffled top specialists and the years that followed were a constant mix of hospitalisations and rehabilitation. After each flare up Katie had to learn to swallow, feed herself, use a toilet, and walk; and each time she never regained her previous level of function.
At the age of 12, she required resuscitation on a daily basis. To control her involuntary movements she was placed in a coma for three months as there was no medication that could help her.
When she was revived from the coma, she underwent a radical treatment where she was fitted with a Deep Brain Stimulator that sends electrical shocks to the brain to override wrong signals.
The operation was partially successful, but she now needs surgery every few years to change the device battery.
However, Katie still has contractions, jaw dislocation, body stiffness and very limited movement. She relies on the support of others to perform all daily personal tasks.