In recent weeks, I’ve received a lot of criticism for the very ambitious goal to crowdfund for a suitable, thus safe, bungalow for my severely disabled son, Brendan Bjorn. I knew I would open myself up to such criticism if I launched such a campaign, but at the urging of friends, I decided to take the leap. I had 2 choices:

1. Raise the funds to purchase the required bungalow
2. Don’t raise the funds and this summer see my first born son not come home to me and his little brother Declan after his spinal fusion operation.

What would YOU do if you were in my situation? 

I really want people who are critical of this fundraiser to think about it, please. If you have children, imagine one of them with Brendan’s same complex, fragile, numerous medical issues. Imagine you have no family to rely on; no one you can turn to for your son’s housing requirement. Imagine you were told it would be years waiting on the social housing list. Imagine you have tried for over a year to be approved for the low interest housing loan scheme provided but the government but unable to obtain it because, as a full time unpaid carer, your social welfare payment isn’t considered as income, nor is your work considered employment despite it being a long term permanent position.

Imagine that the last time your child was in hospital, just a few months ago, you left for a couple of hours with a hospital aid sitting at his bedside who was to be attending to his needs, yet you returned to find him partially slumped over in his bed while the aid sat trimming her fingernails with all the nail clippings scattering on the floor.

Imagine knowing that if your profoundly disabled, non-verbal son with intractable epilepsy, high aspiration risk, and who is unable to reposition himself if he slips into an unsafe position, is left in the care of anyone else, it will not be safe and his life would be at risk because nowhere, no one, will provide the intensive 24/7 care that you will, and that you do.

What would YOU do if you were in my situation?

There have been some people who have been circulating defamatory accusations privately on social media. The proof in hand, there is nothing I can do about it legally as taking anyone to court is prohibitively expensive. So, all I can do is continue to be as transparent as I always have been, which is probably far too much. I’m an open book, so if anyone has any questions, message me privately and I’m more than willing to discuss those questions with you. Gossip is just that – “casual or unconstrained conversation or reports about other people, typically involving details which are not confirmed as true.” It is the hateful smears of people who, for whatever reason, get a sense of joy or superiority from bringing down others. Sadly, at the end of the day, it is my son – both of my sons, actually – who pay any price as a result of those who seek to harm my efforts to obtain this medically required bungalow for my son. I have no choice but to rise above it.

What would YOU do if you were in my situation? 

Some parents seek to give their children what they need by risking their lives crossing a desert, a river and into another country in hopes their children will know a better, safer, more prosperous, life.

Some parents seek to provide a safe, finally peaceful, life for their children by risking their lives putting them on an inflatable raft and crossing a dangerous sea.

Some parents move from county to county as they desperately try to get the best services, school, medical care, and/or housing for their disabled child with many kinds of special needs.

Some parents resort to crowdfunding to try and save or improve their child’s life, be it for a wheelchair, a medical treatment, a home modification, or yes, even a disability suitable house. I am not the first, and sadly, nor will I be the last. Not until governments of all countries see that those most vulnerable people in their society are those most in need of their assistance will crowdfunding for such requirements end. Until then, parents in my situation go to any measure to protect and provide what their child needs. And sometimes, that means turning to the public for help.

What would YOU do if you were in my situation?