> He’s now nearly nine, but his condition means he has the mental age of a newborn and weighs just 11kg.
> Since birth, he has suffered with Allan-Herndon-Dudley syndrome, an extremely rare condition that means he needs 24/7 care and specialist equipment to keep him alive.
This probably sounds horrible but what quality of life does this boy have? It reads as though he’s going to spend his remaining life with zero autonomy or hope of any kind of normality – effectively a prisoner in his own body.
In some ways I’d be tempted to consider it a kindness not to keep him alive in that state for years on end.
Edit: I should add… that doesn’t mean I’m in any way defending rising energy costs or the knock on effects (like this dilemma) they’re causing.
I don’t think they needed to parade this poor kid around to make the case that it’s life or death, plenty of people are going to be struggling to pay for heating bills this winter, in colder homes that could be life threatening in itself
I do think there should be an allowance for extreme cases like this though, it also made me quickly wonder how much my CPAP machine used but apparently it’s only 100 Watts or so, more concerning if there’s blackouts but shouldn’t be too expensive at least
I wonder happened with his biological parents, they realised the gravity of his condition and bailed the fucked out? It’s a pretty depressing story but on the other hand pretty amazing there a people like this lady.
No, he won’t. Take him to a hospital.
A measure of a society’s health is how we treat our most vulnerable, while expecting nothing in return.
If that is mercy killing an unproductive sack of meat for the sake of an energy company’s profits, then may you sleep haunted tonight you heartless ghoul.
Here in Australia we can tell our energy company we have someone on life-sustaining medical devices and it makes it impossible to shut your power off.
I hadn’t even considered that. There’s people with bad illnesses who are kept alive by machines that run on the electricity in the home. If the energy companies keep raising prices, they’ll essentially be either A) indirectly killing children or B) forcing sick kids to be in hospital when they could be in the comfort of their own home.
Thats so awful. Why as a society are we so scared to accept death. This poor boy has no life.
What a useless article. Here are some useful tips:
If you do rely on electric medical equipment, notify your electricity provider and your DNO. You will be put on a priority list, and they will not turn off your electricity or put you on a prepaid meter.
Sometimes you can get the NHS to pay for the electricity, but I have a feeling that is different for each trust.
And don’t you have mobile oxygen bottles? You should not rely on one machine alone.
I told my wife to never keep me alive when I am in this kind of state. It is incredibly cruel and selfish for people to keep a loved on alive just so THEY won’t have to suffer the loss. But they give no thought about that poor child perhaps (very likely) wishing for death. It is barbaric.
There needs to be routine genetic screening for known inherited diseases
Good thing because he relies on life saving equipment, her electricity will never be shut off.
She should really look into this sort of thing before going to the news about it.
see ya later alligator
Set up a go fund me page
What a stupid article. In cases like this Electricity supply actually can’t be disconnected.
16 comments
for emergencies she should look into UPS.
> He’s now nearly nine, but his condition means he has the mental age of a newborn and weighs just 11kg.
> Since birth, he has suffered with Allan-Herndon-Dudley syndrome, an extremely rare condition that means he needs 24/7 care and specialist equipment to keep him alive.
This probably sounds horrible but what quality of life does this boy have? It reads as though he’s going to spend his remaining life with zero autonomy or hope of any kind of normality – effectively a prisoner in his own body.
In some ways I’d be tempted to consider it a kindness not to keep him alive in that state for years on end.
Edit: I should add… that doesn’t mean I’m in any way defending rising energy costs or the knock on effects (like this dilemma) they’re causing.
I don’t think they needed to parade this poor kid around to make the case that it’s life or death, plenty of people are going to be struggling to pay for heating bills this winter, in colder homes that could be life threatening in itself
I do think there should be an allowance for extreme cases like this though, it also made me quickly wonder how much my CPAP machine used but apparently it’s only 100 Watts or so, more concerning if there’s blackouts but shouldn’t be too expensive at least
I wonder happened with his biological parents, they realised the gravity of his condition and bailed the fucked out? It’s a pretty depressing story but on the other hand pretty amazing there a people like this lady.
No, he won’t. Take him to a hospital.
A measure of a society’s health is how we treat our most vulnerable, while expecting nothing in return.
If that is mercy killing an unproductive sack of meat for the sake of an energy company’s profits, then may you sleep haunted tonight you heartless ghoul.
Here in Australia we can tell our energy company we have someone on life-sustaining medical devices and it makes it impossible to shut your power off.
I hadn’t even considered that. There’s people with bad illnesses who are kept alive by machines that run on the electricity in the home. If the energy companies keep raising prices, they’ll essentially be either A) indirectly killing children or B) forcing sick kids to be in hospital when they could be in the comfort of their own home.
Thats so awful. Why as a society are we so scared to accept death. This poor boy has no life.
What a useless article. Here are some useful tips:
If you do rely on electric medical equipment, notify your electricity provider and your DNO. You will be put on a priority list, and they will not turn off your electricity or put you on a prepaid meter.
Sometimes you can get the NHS to pay for the electricity, but I have a feeling that is different for each trust.
And don’t you have mobile oxygen bottles? You should not rely on one machine alone.
I told my wife to never keep me alive when I am in this kind of state. It is incredibly cruel and selfish for people to keep a loved on alive just so THEY won’t have to suffer the loss. But they give no thought about that poor child perhaps (very likely) wishing for death. It is barbaric.
There needs to be routine genetic screening for known inherited diseases
Good thing because he relies on life saving equipment, her electricity will never be shut off.
She should really look into this sort of thing before going to the news about it.
see ya later alligator
Set up a go fund me page
What a stupid article. In cases like this Electricity supply actually can’t be disconnected.