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Tuesday, 14 April 2015
{ 04:50 on 'Never grow up' }
Stuart WickisonThe Boy
Who Can Never Grow OldDuchenne Muscular Dystrophy
Stuart Wickison
Imagine if you were born able-bodied but, without
any warning, all the muscles in your body gradually started to shut down.
Stuart Wickison has a rare genetic
disorder; Duchenne Muscular Dystrophy. The average life span of this situation
is in his early twenties, then aged Stuart was nineteen. But, now he started
one of the most important journey of his life. Within the next two months,
Stuart world will change forever. Although his body failed him, his mind
focused on life. He tells us: "People always argue about the meaning of
life you were born to die But, how about a little in between, what about the
life Well, I'm here for that, I will not suffer ..?, I'm here to make an
impression ".Stuart is studying for his A-Levels. He hopes to become an
artist and attend university, but he needs to pass his exams to gain entry to
university.
Duchenne Muscular Dystrophy or DMD is
a genetic condition that only affects boys. They're born able-bodied and only
find out the full prognosis in their teens. DMD is caused by mutations of the
gene which produces dystrophin, a protein essential for the healthy development
of muscles in the body. Without it all muscles gradually cease to function
causing gradual paralysis.
Having noticed that Stuart wasn't
walking like other toddlers, his parents decided to have him examined. The
results were devastating. Mandy, Stuart's mother recalls "At the age of
three they were telling us that his condition was such that he would lose all
muscles and it would be fatal in the teenage years".
Stuart's condition became so severe
in his teens that he had to leave his home for 24 hour residential care. Nick
Hart a consultant in respiratory medicine explains "Duchenne is a
relentless, progressive disease that will be the cause of the patient's death.
Its got huge physical problems associated with it which will affect the
breathing muscles, the heart muscles and the swallowing muscles. It will affect
nutrition, it will increase the chance of getting chest infections because they
don't have adequate breathing muscle and the ability to cough and clear
secretions".Stuart ha reached an advanced stage of the disease. His
ability to swallow is rapidly deteriorating. For the past three years, Stuart
has attended Treloar College in Hampshire which provides specialist health care
for severely disabled teenagers. The 180 students who live and study here
receive far more than just an education. At Treloar they're encouraged to live
like other teenagers with care and support from the staff.Aged nineteen,
Stuart's not expected to live long into his twenties. But, its now he's
decided to take the biggest step in his life. To leave the sanctuary of Treloar
to study art at university. He tells us "Everyone has dreams and ambitions
whether you're disabled or not, and I don't want to be the one that suffers his
whole life and wastes it". Leaving Treloar, he's not just leaving the care
and support, he'll also be leaving some very close friends.
Prof. Dominic Wells
Scientists are close to finding a
cure, giving Stuart and his friends hope, but more funding is urgently needed.
Stuart is angered at the amount of money spent on people, he perceives as
having made themselves ill, by smoking and over-eating when people like him
with a genetic condition can't get treatment.Funding for research is critical
as scientists now have good reason to believe a cure is in sight. At the
forefront of the research is Professor Dominic Wells. Professor Wells is
pioneering the latest research into treatment that transfers healthy genes into
damaged muscles. He relates "The problem with Duchenne is that you've got
a dysfunctional version of the dystrophin gene. Gene transfer therapy aims to
put back a functional version of the dystrophin gene".
Using viruses, Professor Wells has
transferred a man-made version of the gene into animal muscle, reversing the
effects of Duchenne. He continues "By harnessing the ability of viruses,
that have evolved over millions of years specifically for getting genetic
material into cells, we're able to take that carefully evolved function and use
it to make our very efficient gene transfer". Developing a treatment is a
long and complicated process which is very unlikely to happen in Stuart's
lifetime.
Mandy, Stuart's Mother
Treloar students are encouraged to
have a full social life, and Friday night sees them hitting the night spots in
Woking. With the drink flowing they explain that, despite their disability,
they still have desires and they would all love to lose their virginity.Stuart
has to wear a mask connected to a night ventilation machine when he is put to
bed. The machine stops his oxygen levels falling dangerously while he
sleeps.Stuart's ability to swallow is getting progressively weaker and food has
passed into his lings. Unable to clear his lungs, Stuart is rushed to his room
for further treatment. If the food doesn't come out he will get a deadly
infection. Unable to remove it with physio, his carer resorts to vacuuming his
lungs. The food is successfully removed, but his plans for going to university
are looking ever more doubtful. Stuart may have survived this scare, but next
time he may not be so lucky.
With less than a week to go before
university begins, Stuart is rushed to St Thomas' hospital. Unable to eat
normally, he needs a feeding tube inserted into his stomach. If he gets any
thinner, his body wont be able to stand infections. Stuart is so fragile, he
can't have a general anaesthetic. The procedure can only be carried out with a
number of local anaesthetics. It is a success.Early November, the beginning of
the university term and students come from all over for the first day; Stuart
is one of them
!
|
Tuesday, 14 April 2015
{ 04:50 on 'Never grow up' }
Stuart WickisonThe Boy
Who Can Never Grow OldDuchenne Muscular Dystrophy
Stuart Wickison
Imagine if you were born able-bodied but, without
any warning, all the muscles in your body gradually started to shut down.
Stuart Wickison has a rare genetic
disorder; Duchenne Muscular Dystrophy. The average life span of this situation
is in his early twenties, then aged Stuart was nineteen. But, now he started
one of the most important journey of his life. Within the next two months,
Stuart world will change forever. Although his body failed him, his mind
focused on life. He tells us: "People always argue about the meaning of
life you were born to die But, how about a little in between, what about the
life Well, I'm here for that, I will not suffer ..?, I'm here to make an
impression ".Stuart is studying for his A-Levels. He hopes to become an
artist and attend university, but he needs to pass his exams to gain entry to
university.
Duchenne Muscular Dystrophy or DMD is
a genetic condition that only affects boys. They're born able-bodied and only
find out the full prognosis in their teens. DMD is caused by mutations of the
gene which produces dystrophin, a protein essential for the healthy development
of muscles in the body. Without it all muscles gradually cease to function
causing gradual paralysis.
Having noticed that Stuart wasn't
walking like other toddlers, his parents decided to have him examined. The
results were devastating. Mandy, Stuart's mother recalls "At the age of
three they were telling us that his condition was such that he would lose all
muscles and it would be fatal in the teenage years".
Stuart's condition became so severe
in his teens that he had to leave his home for 24 hour residential care. Nick
Hart a consultant in respiratory medicine explains "Duchenne is a
relentless, progressive disease that will be the cause of the patient's death.
Its got huge physical problems associated with it which will affect the
breathing muscles, the heart muscles and the swallowing muscles. It will affect
nutrition, it will increase the chance of getting chest infections because they
don't have adequate breathing muscle and the ability to cough and clear
secretions".Stuart ha reached an advanced stage of the disease. His
ability to swallow is rapidly deteriorating. For the past three years, Stuart
has attended Treloar College in Hampshire which provides specialist health care
for severely disabled teenagers. The 180 students who live and study here
receive far more than just an education. At Treloar they're encouraged to live
like other teenagers with care and support from the staff.Aged nineteen,
Stuart's not expected to live long into his twenties. But, its now he's
decided to take the biggest step in his life. To leave the sanctuary of Treloar
to study art at university. He tells us "Everyone has dreams and ambitions
whether you're disabled or not, and I don't want to be the one that suffers his
whole life and wastes it". Leaving Treloar, he's not just leaving the care
and support, he'll also be leaving some very close friends.
Prof. Dominic Wells
Scientists are close to finding a
cure, giving Stuart and his friends hope, but more funding is urgently needed.
Stuart is angered at the amount of money spent on people, he perceives as
having made themselves ill, by smoking and over-eating when people like him
with a genetic condition can't get treatment.Funding for research is critical
as scientists now have good reason to believe a cure is in sight. At the
forefront of the research is Professor Dominic Wells. Professor Wells is
pioneering the latest research into treatment that transfers healthy genes into
damaged muscles. He relates "The problem with Duchenne is that you've got
a dysfunctional version of the dystrophin gene. Gene transfer therapy aims to
put back a functional version of the dystrophin gene".
Using viruses, Professor Wells has
transferred a man-made version of the gene into animal muscle, reversing the
effects of Duchenne. He continues "By harnessing the ability of viruses,
that have evolved over millions of years specifically for getting genetic
material into cells, we're able to take that carefully evolved function and use
it to make our very efficient gene transfer". Developing a treatment is a
long and complicated process which is very unlikely to happen in Stuart's
lifetime.
Mandy, Stuart's Mother
Treloar students are encouraged to
have a full social life, and Friday night sees them hitting the night spots in
Woking. With the drink flowing they explain that, despite their disability,
they still have desires and they would all love to lose their virginity.Stuart
has to wear a mask connected to a night ventilation machine when he is put to
bed. The machine stops his oxygen levels falling dangerously while he
sleeps.Stuart's ability to swallow is getting progressively weaker and food has
passed into his lings. Unable to clear his lungs, Stuart is rushed to his room
for further treatment. If the food doesn't come out he will get a deadly
infection. Unable to remove it with physio, his carer resorts to vacuuming his
lungs. The food is successfully removed, but his plans for going to university
are looking ever more doubtful. Stuart may have survived this scare, but next
time he may not be so lucky.
With less than a week to go before
university begins, Stuart is rushed to St Thomas' hospital. Unable to eat
normally, he needs a feeding tube inserted into his stomach. If he gets any
thinner, his body wont be able to stand infections. Stuart is so fragile, he
can't have a general anaesthetic. The procedure can only be carried out with a
number of local anaesthetics. It is a success.Early November, the beginning of
the university term and students come from all over for the first day; Stuart
is one of them
!
|
Hi, we are from section 3 intake jan 2015. This blog is exclusive for our english assignment. Thank you for visiting us.
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