To those who find themselves in a difficult situation it does not take long to realise that ‘divine justice’ is nothing but a myth! Karma is nothing more than a fancy word for certain situations in life are so tremendously sad that it is impossible they would be a ‘pay back’ for anything else.
Those who live them also soon find out that everything else in life does not get easier just because they find themselves in further difficulties than the majority. Boilers break, work can still be upsetting, the train still gets cancelled… these are everyday hassles that don’t spare anyone no matter how easy or hard life gets.
I get this, I don’t expect the universe to change for me or for us, it is the way it is and it can’t be helped. I do expect however that touch that sets us apart from animals and all living beings – HUMANITY!
I will not go into detail into the story I am referring to as the parents themselves do it a lot better – Luca Loves Life Appeal – in a nutshell, Luca is a little boy who suffers from Tay-Sachs, and by now we all know too well what TS does to children. Luca’s big sister Ella was placed in a school that is too far from their home to avoid having to pack little Luca and all his equipment in the car to take and pick up Ella from school. If Ella had been placed closer to home then her neighbours could help with the school run on those days when Luca is unwell and avoid him having to go through rain and cold when getting in and out of the car – as Luca is fortunate to have responsible parents that will not leave him in the car waiting on his own!
This is a simple story really, the council was obviously not aware that Luca was so unwell and placed Ella in the school which was the 3rd choice. One would think that just the fact that the parents had a child diagnosed with a terminal illness in the beginning of the year would be enough for the council to cut them some slack and bend whatever rules they need to, but unfortunately after appeals, tv appearances, several media coverage and a tonne of paperwork produced by the parents who already have very low reserves of physical and emotional energy, a place for Ella was still denied on the grounds that health problems are no grounds for appeal… so what are the grounds for appeal?
Upon receiving the news that another appeal had been obtained I sent a message to the parents to suggest that they take Luca to this appeal so that perhaps a better understanding of Luca’s situation is passed on, to my great shock the parents replied to say that they had already done that on the second appeal.
And so I ask the panel of Birmingham’s LEA that had the deciding vote on Ella’s placement if they really looked at Luca? Did they not see that Luca is not moving, that he has a tube down his nose to feed him, that he had to have suction so that he does not inhale secretions to his lungs, that he has seizures and he is not even two years old yet!
And then I ask myself if these were humans that sat on that same room with Luca and his parents, that read through what Tay-Sachs is and what it does to children… I am certain that if they are humans they do not have children, for any parent would sympathise with this family and do the humane thing and bend the rules!
I will make it even more simple, I would like the panel responsible to close their eyes and think how it would feel to be on Luca’s shoes, would they like to be moved around from a car to a pram everyday when on top of all he has he is suffering from yet another infection as so often occurs on children with Tay-Sachs!
I wonder if the members of this panel have never taken a day off due to sickness or their children’s sickness (although I sincerely hope they have none!) and how would they have felt if they were made to get themselves (or the children I hope they don’t have) in the car and drive to work or school – not acceptable, right? Well, this is what they are doing to Luca every single day!
Finally I would like to say that I thought that the world was made of rules that we (humans) created and that rules are there so that they can regulate, not so that they can harm, hurt or kill. Rules are what makes the world a better place, a space where all people live in harmony – it’s called society! I am guessing the panel of Birmingham’s LEA is not educated in sociology or truly understands what this means… and as I know they are humans and not robots they should be able to see this case for what it is and do the humane thing!
I would like to ask everyone who has read this to forward this case to their friends and family and to write to show their support to Luca’s family by writing to Brigid Jones below:
You can see the entire story at Luca Loves Life Appeal page on facebook.
This is really important, please help!