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40 years old Tarak Shil is crippled by sudden onset of deadly Motor Neurone disease AHC .In a span of 2 years completely fit & strong Tarak is now unable to sit or stand without support.The disease is progressing fast and affected upper and lower limbs.If not stopped it will finally impact respiratory muscles and restrict breathing.Help his financially exhausted family to pursue treatment in Bangalore.
It started with a mere pain in the knee of left leg in 2021 summer.Tarak Shil 38 yrs at that time , a photographer by profession living in Refugee colony, Kakdwip , a small town in West Bengal was a person always ready to help others in need.He was a strong person , able to do any physically demanding job.
His wife Barnali ,son Abhinav(9 yrs) ,aged parents and mentally retarded elder brother was entirely dependent on him.
A knee pain started in 2021 summer, and gradually worsened to spread upwards gradually.After consultation with doctor and orthopedic treatment ,there was no improvement.It worsened to cause weakness in left leg and sometimes he fell down while walking or cycling due loss of balance .
After normal MRI reports , Nerve conduction velocity(NCV)& Electromyography was conducted in Bangur Insitute of Neurology,kolkata. Results inferred that Tarak was suffering from a very rare Motor neurone desease(MND) called Anterior horn Cell(AHC) disease.Only 1 out of 1 lakh person suffers from this disease.
His wife Barnali ,son Abhinav(9 yrs) ,aged parents and mentally retarded elder brother was entirely dependent on him.
A knee pain started in 2021 summer, and gradually worsened to spread upwards gradually.After consultation with doctor and orthopedic treatment ,there was no improvement.It worsened to cause weakness in left leg and sometimes he fell down while walking or cycling due loss of balance .
After normal MRI reports , Nerve conduction velocity(NCV)& Electromyography was conducted in Bangur Insitute of Neurology,kolkata. Results inferred that Tarak was suffering from a very rare Motor neurone desease(MND) called Anterior horn Cell(AHC) disease.Only 1 out of 1 lakh person suffers from this disease.
The anterior horn cells control all voluntary movement. Motor activity(hand,feet & other movement), respiratory, speech, and swallowing functions are dependent upon signals from the anterior horn cells.
AHC disease causes gradual generation of the anterior horn cells in Spinal cord , as a result of which muscles in the body responsible for movement , speech, swallowing gradually stops working .The desease may finally progresses to affect the breathing muscles and leads to respiratory failure.
There are no medicine for the desease currently in the world.Only one medicine Riluzole is prescribed which according to research can only delay the progress of disease by 5-10%. Treatment is only rehabilitation, occupational therapy, psychological & social support .
There are some recent development in stem cell treatment , which are in research phase and under trial but not possible in West Bengal.
Tarak Shil now had gradually lost ability to stand , move or sit without support .Movement is also very difficult with support.Left leg is completely paralysed upto hip ,right legs and both arms are also deteriorating very fast . Arms and legs had narrowed due to muscle degenaration and even going to the bathroom with support is like climbing a mountain for him.
There is no income from last 2 years and all saving had been exhausted.
His wife Barnali had tried all kinds of homeopathic, ayurvedic treatment but had got no results.
She is still not ready to give up her fight to save her husbands life.She knows that the only way to save his husband's life is to stop the progress of the desease and stop further degeneration of nerve cells.
After consultation with Dr E.V.Joshi , renowned neurologist in Brain's hospital Bangalore , she had got some hope to save her husband.Dr Joshi had told that by neuromodulation treatment the disease progression can be restricted .
AHC disease causes gradual generation of the anterior horn cells in Spinal cord , as a result of which muscles in the body responsible for movement , speech, swallowing gradually stops working .The desease may finally progresses to affect the breathing muscles and leads to respiratory failure.
There are no medicine for the desease currently in the world.Only one medicine Riluzole is prescribed which according to research can only delay the progress of disease by 5-10%. Treatment is only rehabilitation, occupational therapy, psychological & social support .
There are some recent development in stem cell treatment , which are in research phase and under trial but not possible in West Bengal.
Tarak Shil now had gradually lost ability to stand , move or sit without support .Movement is also very difficult with support.Left leg is completely paralysed upto hip ,right legs and both arms are also deteriorating very fast . Arms and legs had narrowed due to muscle degenaration and even going to the bathroom with support is like climbing a mountain for him.
There is no income from last 2 years and all saving had been exhausted.
His wife Barnali had tried all kinds of homeopathic, ayurvedic treatment but had got no results.
She is still not ready to give up her fight to save her husbands life.She knows that the only way to save his husband's life is to stop the progress of the desease and stop further degeneration of nerve cells.
After consultation with Dr E.V.Joshi , renowned neurologist in Brain's hospital Bangalore , she had got some hope to save her husband.Dr Joshi had told that by neuromodulation treatment the disease progression can be restricted .
But she is unable to collect the money required to take her husband to Bangalore with an attendent.As per doctor ,treatment will take sometime , so they need to make some arrangement to stay in B'lore. So it is our earnest request to help Barnali and his 8 yrs old son Avinav to fight the hardest battle against a desease that had completely changed their family's life by contributing whatever you can so that she can collect money for travel, attendant, wheel chair, accomodation in bangalore, initial treatment cost .
