Question in regards to Life support..

[Khoder]

Assalamu alaykum

I have a 13 year old daughter who is very sick. She was a happy healthy child until a week after her 12th birthday which was in November 2023. A week after her birthday she started having seizures. As in epileptic seizures. At first she would have them very lightly until she got to the point where she would seize uncontrollably for 10 - 20 minutes at a time. She was put on medication and they seemed to help for a little while until she hit her 13th birthday. Then her seizures would happen non stop for hours upon hours.. we would sit in hospital watching the doctor's and professors scratching their heads non stop not knowing what to do and how to deal with it. And we sat there feeling completely useless. 

The mother and I both had an emergency genetics tests and the results that came back was our daughter had FARS2 disease. It's a rare inherited disorder which affects protein production within the mitochondria. Unfortunately it's so rare that there is no cure or treatment for it. 

So at the moment we have a 13 year old daughter who currently has the following

*Complex Epilepsy

*FARS2 Disease (mitochondrial dysfunction)

*Early onset Dementia

So currently where we are at is my daughter's body can not produce or take proteins which are essential for any human to survive. Her epilepsy at the moment is managed with so many different medications she takes on a daily basis throughout the whole day. Her dementia has started progressing so far that her frontal lobe, temporal lobe, parietal lobe and cerebellum are becoming non existent. Her language skills have deteriorated so bad that it takes her a long time to say what's on her mind and usually forget half way through what she was trying to say. Her long term memory is ok but her short term memory is not so good. 

She is now getting to the point where she doesn't want to eat, doesn't go to the toilet and is starting to becoming a little aggressive. 

Doctors have given us a 0% chance that they can do nothing to reverse or help her in any way and they've told us she has 6 months to 1 year left, so we just have to sit here and slowly watch her wither away. Praying day and night asking for Allah (سُبْحَانَهُ وَ تَعَالَى) to intervene and give her something to allow us to enjoy some more time with her. 

My question is this

From an Islamic perspective, I've asked about life support and was told you will not be allowed to switch it off once she is on it. But do I have to put my daughter on life support when the time comes? My concern is once she's on life support and she is brain dead at what point an I allowed to switch the machine off. This is my concern. I don't want her on a machine suffering know that there may never be a cure or treatment that will help her.

I see her struggling everyday with this disease and it's breaking my heart so much that tears never stop rolling from my eyes. I just want her at peace, please give me advice and please make dua for her. 

 

I apologise for such a long post. 

Edited June 16 by Khoder
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