Friday, March 03, 2006
Take my breath away - Berlin
My weekend starts officially at 1 pm on Fridays - right after my Economic, Cultural and Social Rights class. After that, it's eating, surfing, blogging (non-human rights related stuffs) and watching movies all weekend long!
I'd try not to think so much of studies - give me brain some rest. But I read sumthing just now which got me all worked up - and made me want to blog.
Baby MB is barely one and a half years old. It has not been easy for him - nor for his parents. Baby MB is a one in 64,000! Literally. He was born with spinal muscular atrophy - a condition suffered by every one in 64,000 babies.
What is SMA? Well, to cut to the chase, it is a genetic condition which leads to almost total paralysis.
Baby MB is "...not mentally impaired but can only move his eyebrows, feet and fingers slightly. The rest of his body is immobile". He responds to his family.
He cannot eat by himself and has been fed using a feeding tube. He cannot breathe unaided - and therefore relies on the ventilating machine to pump air into his lungs.
What is his parents' response?
His mother is quoted saying that they want to "...take him home and give him a life instead of being stuck in a hospital". They intend to give Baby MB the best quality of life that he can ever have. They want "everything possible to be done for their child as long as he is not in great distress and has a worthwhile existence".
What are the views of the experts?
Anita Macaulay is the chief executive of the Jennifer Trust for Spinal Muscular Atrophy. She said that "pioneering work in US had led to some children living at home with a relatively good quality of life until the age of seven or eight and beyond".
She also said that drug trials due to start in the UK within the next 12 months "signalled a glimmer of hope for sufferers".
What are the views of the doctors?
Let him suffocate and die!!!
What the...???????
Yup. Really! They applied to the Court for an order that Baby MB be taken off the ventilator. The doctors who took an oath to protect and preserve life are asking that the 17 month old baby be left to die in a cruel manner - being slowly deprived of oxygen.
Their reasoning?
"His hospital doctors say his quality of life is so poor that it is in his best interests to let him die." Read the news report here.
Wait a minute - is Baby MB in great pain? Nope. Are his mental faculties functioning normally? Yup. Does his parents love him? It sure appears so! Is there any hope for a cure? Extremely slim - but yes, there is a "glimmer of hope"!
So what in the world made the doctors say that his quality of life is gonna be so poor???? Just because he cannot walk like most of us? He cannot breathe without the help of machines? He will need people to clean him and take care of him 24-7?
Is that how you measure the quality of life?
What we can be sure of (if his breath is not cruelly taken away) is that Baby MB will be able to admire the colours and beauty of a sunset on an almost daily basis. He will be able to hear the voices of his parents and others telling him how much they care for him. He will be able to see the smile on his parents' faces, hear their laughter, share in their tears. He will be able to read Pride & Prejudice - or John Grisham's novels if he fancies that! He can watch the DVDs of the extended versions of the Lord of the Rings trilogy. He will be moved to tears listening to the beautiful music of Bach, Chopin and Mozart.
Above all that, he will be able to expereince love!
How many of us - so-called normal people - would gladly give up everything to experience love? Love from our parents, our siblings, our best mates. Love from God. Most of us do expereince such love. And it is because of that that we know that life is worth living!
So who do the doctors think they are when they say that it is in Baby MB's best interest to be left to suffocate and die because he will experience a "poor" quality of life?????
Finally, what do the Courts say?
The case is still going on - and will continue on Monday.
I wait - and pray.
I'd try not to think so much of studies - give me brain some rest. But I read sumthing just now which got me all worked up - and made me want to blog.
Baby MB is barely one and a half years old. It has not been easy for him - nor for his parents. Baby MB is a one in 64,000! Literally. He was born with spinal muscular atrophy - a condition suffered by every one in 64,000 babies.
What is SMA? Well, to cut to the chase, it is a genetic condition which leads to almost total paralysis.
Baby MB is "...not mentally impaired but can only move his eyebrows, feet and fingers slightly. The rest of his body is immobile". He responds to his family.
He cannot eat by himself and has been fed using a feeding tube. He cannot breathe unaided - and therefore relies on the ventilating machine to pump air into his lungs.
What is his parents' response?
His mother is quoted saying that they want to "...take him home and give him a life instead of being stuck in a hospital". They intend to give Baby MB the best quality of life that he can ever have. They want "everything possible to be done for their child as long as he is not in great distress and has a worthwhile existence".
What are the views of the experts?
Anita Macaulay is the chief executive of the Jennifer Trust for Spinal Muscular Atrophy. She said that "pioneering work in US had led to some children living at home with a relatively good quality of life until the age of seven or eight and beyond".
She also said that drug trials due to start in the UK within the next 12 months "signalled a glimmer of hope for sufferers".
What are the views of the doctors?
Let him suffocate and die!!!
What the...???????
Yup. Really! They applied to the Court for an order that Baby MB be taken off the ventilator. The doctors who took an oath to protect and preserve life are asking that the 17 month old baby be left to die in a cruel manner - being slowly deprived of oxygen.
Their reasoning?
"His hospital doctors say his quality of life is so poor that it is in his best interests to let him die." Read the news report here.
Wait a minute - is Baby MB in great pain? Nope. Are his mental faculties functioning normally? Yup. Does his parents love him? It sure appears so! Is there any hope for a cure? Extremely slim - but yes, there is a "glimmer of hope"!
So what in the world made the doctors say that his quality of life is gonna be so poor???? Just because he cannot walk like most of us? He cannot breathe without the help of machines? He will need people to clean him and take care of him 24-7?
Is that how you measure the quality of life?
What we can be sure of (if his breath is not cruelly taken away) is that Baby MB will be able to admire the colours and beauty of a sunset on an almost daily basis. He will be able to hear the voices of his parents and others telling him how much they care for him. He will be able to see the smile on his parents' faces, hear their laughter, share in their tears. He will be able to read Pride & Prejudice - or John Grisham's novels if he fancies that! He can watch the DVDs of the extended versions of the Lord of the Rings trilogy. He will be moved to tears listening to the beautiful music of Bach, Chopin and Mozart.
Above all that, he will be able to expereince love!
How many of us - so-called normal people - would gladly give up everything to experience love? Love from our parents, our siblings, our best mates. Love from God. Most of us do expereince such love. And it is because of that that we know that life is worth living!
So who do the doctors think they are when they say that it is in Baby MB's best interest to be left to suffocate and die because he will experience a "poor" quality of life?????
Finally, what do the Courts say?
The case is still going on - and will continue on Monday.
I wait - and pray.
# posted by imissw : 7:59:00 pm
