Saturday, February 28, 2009


Emma and Michael (bf)

Emma and Nikki (mum)

Aleishia, Emma and Luke

Ball season! Note the high-heels! Emma loves her high-heels and finds the angle less painful for her foot. We worry about risk of injury but Emma insists.

Emma free-loading behind Dad. (Emma has not been able to pedal a bike since 2002)

Emma (bass) on stage with Montana Late

Emma (right) and friends prepare for school ball

Emma's beloved turtle Fred

Emma's plans for treatment in Philadelphia

I'm setting up this blog as a space where we can record Emma's journey to Philadelphia so that her family and friends in New Zealand can remain informed of her progress. This blog is also open to the public because over the years we have been given hope and gained a lot of knowledge by following the treatment options that other sufferers have undertaken. In the past year we have closely followed the progress of Alessa's treatment with ketamine and thank her and her parents for sharing their story.

Emma has suffered from Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD) since she was 10 years old (now almost 17). The pain in her right foot is constant and debilitating and severely affects her quality of life. It is becoming increasingly difficult for Emma to continue with her schoolwork as the pain continues to increase and now affects her entire right leg and back. After many years of unsuccessful treatments we have contacted Dr Robert Schwartzman in regard to the research program he is conducting for CRPS sufferers using ketamine for treatment. He agreed to see Emma when she was 17 and so our plans to travel to Philadelphia began to take shape.

It was not easy to make the decision to take Emma to the US for treatment which is still in a research phase. The decision for Emma has been easier and she has not wavered from her immediate desire to try the new treatment. We are under no illusions that this treatment is a magical cure but it is certainly a path that is producing some excellent results for many who suffer from this crippling disease.