Samantha's story

In January 2014 I was diagnosed with Pompe after years of back pain, getting weaker and shortness of breath. I first noticed symptoms in 2007, after the birth of my son, it seemed harder for me to get fit again, and subsequently after my daughter in 2009. I used to love running and attending all the Les Mills classes, but over time it became harder and harder to keep up. I put it down to not being fit enough, not trying hard enough at the gym, not making enough time for exercise.

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Unfortunately, and I suppose I should say unsurprisingly as I don’t know why I ever put faith in politicians, with the change of government we have not seen a move to change in funding for rare diseases. This is despite the current government, Labour, stating in their campaigning that they would, “restart the rare diseases fund with strong consumer voice in decision-making, and they would invest an initial $20 million spread over four years.” We are still hopeful that this government will look to make the necessary changes for rare disease funding so that everyone has a fair chance at access to treatment.

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