While I admire their willingness to give their whole life to their son, I wonder what it means for the rest of us who haven’t gone to such extreme lengths.
Anthony and I decided long ago that we would put all our energy into giving Aidan quality of life rather than focusing on a cure but that doesn’t mean we don’t sometimes doubt that decision. Movies like ‘Lorenzo’s Oil’ leave you wondering if you could be doing more, researching after hours, trying new therapies, etc.
For a while Anthony and I tried a cocktail of vitamins recommended for people with a mitochondrial disease. The evidence is inconclusive but we decided it was worth a shot. Unfortunately, it put too much pressure on Aidan’s little body and he passed most of it out before it had a chance to do any good. We never tried it again.
I know many Australian families fundraise and borrow money to send their sick child to Europe or the US for some miracle cure. It often comes with ambiguous results, and is generally not supported by Australian doctors, but they are determined to get there. While other families I know are forced to break the law to purchase drugs, like cannabis, on the black market. For some, the decision to try everything is worth the risk. For others, they wonder if it is worth the financial and emotional stress on the family. And what about the child? Is taking them away from their support network when they need it most the answer? Can they really be put through more therapies and tests? Then there’s the heartache that follows if the treatment doesn’t work.
There is no right or wrong in these scenarios. Indeed, there were times in the documentary when the parents, sore from hours of horse riding, and with their child still throwing tantrums, wondered if they had done the right thing for their son or themselves. In the end they saw marginal improvement. Was it worth it? Only, they can answer that.
There is an enormous pressure on families who have a child with a disability to invest everything into finding a ‘cure’. The pressure comes from family, friends and strangers at the shops, but mostly it comes from within. It’s easy to say you would do anything to save your child but sometimes ‘anything’ is too much.