I live in Invercargill with my wife Leah (Lee) and two children, Jackson and Charlotte. It’s hard work keeping up, but worth the effort.
After being diagnosed with pompe disease in 2001 the full reality of the situation did not really sink in.
It is only with reflection on the last number of years that the reality of what has been lost has become a complete reality. When I now consider the situation I currently find myself in, the phrase “things could be worse” doesn’t seem to have the positive impact that it used to.
The reality is that this condition takes away your body’s ability to do most things others take for granted in every day life, and it not only has a physical impact but also a psychological one as well.
The question which I have to ask would be;
“How sick or incapacitated would a person have to be before Myozyme would be considered as a life saving drug”?
For anyone with a progressive disability;
When dealing with the medical support system, figure out what you need, and what would work for you,
rather than be given something that sort of does the job, which is decided by a person who is trying to understand your situation.
After following the development of the drug Myozyme for a number of years and being told of the stages it would have to go through before it would become available for patient use, I now see a glimmer of hope on the horizon. While wheelchairs and other personal aids are available for day to day life, there is no substitute for the ability to breathe.
Reading stories from those who have had Myozyme as a treatment and the positive impact it is having on their health, I can only hope that our medical authorities in New Zealand can also see that it would benefit those of us here as well.