As a parent of a strong warrior with additional needs, you soon learn to become a proud advocate. We are a family of four based in Melbourne, Australia and like so many other families around the world, our life changed dramatically the moment we received our daughter’s diagnosis.
Chiara is now five years old, I’m in awe of her strength of spirit and determination. Due to a rare brain condition, Chiara us unable to walk, talk and has a limited life expectancy. Yet the power of her potential is so much more than any diagnosis states, and I’ll always honour that as her parent.
I’ve blogged for years and advocated for her best life, yet the biggest example of the power of advocacy was with Virgin Airlines Australia and our favourite GoTo seat.
It all started just before take-off, Chiara was seated comfortably in the GoTo seat and as a family we were all relaxed and ready for the flight ahead. Then a staff member asked us to remove her from the GoTo seat.
We explained her medical and physical situation, that she was unable to sit by herself and required lateral supports to hold her body in an upright position. However due to compliance regulations we were not able to use the GoTo seat. As a result we had to hold Chiara for the duration of the flight.
So, our GoTo seat remained empty for the entire flight (aside from a furry friend - daughter’s toy) and we had to manage holding Chiara for the duration of the flight, which meant dealing with strong muscle tone and a frustrated little girl who just wanted to sit on her own.
The impact of this created so much unnecessary stress for our family, but most of all Chiara.
It might not look like much from an outsider’s view, but when you have to lift, carry, feed, change and all the other care required in raising a beautiful child with extensive physical and medical needs, it can be exhausting.
So, when situations like these arise, it’s so much more than ‘sorry, that seat is not allowed’. It’s the frustration and the lack of awareness and support for families and children living with a disability.
It’s the fact that many parents are up all night attending to their child’s complex needs. It’s the reality that parents are already dealing with a huge amount of extra requirements for their child. Let alone the freedom that the GoTo allows for children to be in their own space comfortably.
On the return flight staff supplied a harness, however it did not support Chiara’s body, her head flopped forward and there were no lateral supports to hold her upright.
Again, extra stress placed upon a child who is already dealing with so much in their day-to-day.
The only support I had ever seen Chiara fully supported in on a flight, was the GoTo seat, and I wasn’t about to give up on the possibility of having her access it in the future when flying. I became a mum on a mission to start a conversation about accessible travel, because if anyone was going to take it on, it would be someone as innovative as Virgin Airlines.
I shared my experience on social media, along with photos to highlight the need for the GoTo and just how beneficial it is. There were hundreds of responses to my original post from families sharing photos of their children and the struggles they also experienced when flying.
I was shocked to hear that many families said they didn’t even consider flying, simply because of the seating issues.
I was so thankful to hear back from Virgin Airlines who read my social media post and invited our family to their head office to discuss further. There were many phone calls and emails. I was told that it was going to be really difficult to get any kind of approval, many people suggested it would be impossible.
Yet I never let it stop me, I kept thinking about Chiara and how happy she was to be able to sit independently with the GoTo seat, something that most of us take for granted. I also thought about families who never travelled simply due to the seating issues for their children, and I continued to advocate and educate wherever I could.
Six months after my original post, and many emails and calls in between, I received a phone call from Virgin Airlines Australia that the GoTo seat had been approved. I literally burst into tears, it’s so much more than just a seat or just a flight.
It’s the way in which the world literally opens up for so many of us and our children.
Since Virgin Airlines Australia’s approval of the GoTo seat, my inbox has been flooded with messages from families who are booking their first holiday ever, simply because of this change. What a powerful impact, that families can travel with a lot more support, ease and flow.
Thank you again to Firefly for creating the GoTo seat, it’s literally opening up the world for so many!