I’m an over-sharer! Yeah-yeah what a surprise, you say. Splashing it all over social media. Who the hell cares? I certainly don’t..! People are so overloaded with their ‘feeds’ and I know if I don’t want to get into something, I keep scrolling.
However, the benefit of sharing in social media is that it may just be picked up by someone who needs your input, as you need theirs. Rare disease needs more promotion, awareness and support.
With social media, we have found a few children dotted around the world, including Australia that have the same diagnosis as Mr Danger.
Through social media, we’ve been able to connect with other parents about ways we can help our kids, that we may not have considered before. Unlike life before social media, we are able to connect with other families all around the globe.
I don’t know where I’d be if it wasn’t for social media. Sharing my worries and anxieties has taken a load off. And at the same time, seeing other children progress along the way, is such a lift and a reminder anything is possible.
Research cannot be done if we aren’t willing to share our story. And research is what Rare Disease Day is all about this year.
After losing my dad after a short battle with pancreatic cancer late last year, after 40 years we are still no nearer to finding an early detection method for it or an improvement on the 7% survival rate. More research is needed.
As with Mr Danger, there is no such medicine to support him with his intractable epilepsy condition… that is, until now.
We have a possibility of joining clinical trials with the support of our neuros backing us. We haven’t really given them a choice as we’ve made it clear we’ll do our own research before we get to the next step! We are prepared to do this. In fact, we have discovered many parents are doing this now. Sick of waiting, sick of the red tape, sick of a condition holding back their child’s progress. So we take matters into our own hands.
The next step is a conference in March that will help us and educate us with other children who have had a rare brain surgery in respect of their rare condition, as it was their only way for a future seizure free. The surgery promises a future with real growth and development. What every parent dreams of for their child, even before they are born.
This is the first conference in Australia, ever. There is a select few that will attend, but it is such an important time for the organisation. This is real support and swapping stories can potentially lead to great research possibilities.
I am hopeful that as time goes on, research for rare conditions will be taken seriously in that they are supported by our Government and a National Rare Disease Plan is put in place, much sooner rather than later .