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Important: A lot has changed since I first started this fundraising campaign for my Father's survival with the rare neurological disease (ALS) more than a year ago on Nov 18, 2019. ALS is the same disease that theoretical physicist Stephan Hawking had. Due to the irreversible nature of the disease, the requirement of lifelong and expensive care, and repeated ICU admissions, I have turned this fundraising page into a regular fundraising page with changing goals for him.
[Dec 4th, 2020] We had to rush to the ER as our father was rejecting all the feeds given to him, had a distended abdomen, low body temperature, and full body edema. He was given fluids, medications, and antibiotics through IV. The swab sample for his COVID-19 RTPCR test was collected and sent to the lab. His COVID-19 report came negative and he was shifted to the ICU at 10:30 AM the next day. His body started swelling, body temperature, and blood pressure started going further down during the treatment. He is in a very critical state. Please read the "updates" section for the details.
# Forth ICU Admission (During Dec 4th, 2020 - Dec 22nd, 2020)
[Dec 4th, 2020] We had to rush to the ER as our father was rejecting all the feeds given to him, had a distended abdomen, low body temperature, and full body edema. He was given fluids, medications, and antibiotics through IV. The swab sample for his COVID-19 RTPCR test was collected and sent to the lab. His COVID-19 report came negative and he was shifted to the ICU at 10:30 AM the next day. His body started swelling, body temperature, and blood pressure started going further down during the treatment. He is in a very critical state. Please read the "updates" section for the details. [Dec 22nd, 2020] Once again, beating all the odds, he recovered from the severe metabolic disturbences and got back to the home ICU setup.
[Feb 24th, 2020] We presented him to the ER for further evaluation. Reports were fine and currently being managed at home ICU with 24X7 nursing care, like ever before.
# Third ICU Admission (During Feb 5th, 2020 - Feb 17th, 2020)
[Feb 5th, 2020] Our father is shifted from our home ICU setup to hospital ICU due to severe GI infection, septic shock and is critically ill. Please read the "updates" section for more details
[Feb 17th, 2020] Against all the odds, he recovered from the sepsis and got back to our home ICU setup.
[Feb 24th, 2020] We presented him to the ER for further evaluation. Reports were fine and currently being managed at home ICU with 24X7 nursing care, like ever before.
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There is very little or no awareness of ALS among the general public and even qualified doctors don't know all aspects of the management of the disease. People with ALS end their lives because they can't afford its very expensive management (Click here, here, here, here, here). Many ALS patients die because their family members don't know how to manage the disease. Moreover, there is no support from the Indian government for the home ICU setup and its management for ALS patients, unlike some other countries where complete support of medical supplies, as well as the cost of two ventilators (running and backup), is provided by the government.
# Original Story of The Campaign (Story since the ALS diagnosis till home ICU care as of November 18th, 2019)
Amyotrophic Lateral Sclerosis (ALS) / Motor Neuron Disease (MND) is a very rare, incurable and progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord which gradually takes away the patient's ability to walk, move, speak, express, chew, swallow, eat and breath due to irreversible paralysis of all voluntary muscles in the body. It effectively renders the patient with a perfectly healthy brain trapped inside his own body. The patient has an average life expectancy of 2 to 5 years and usually dies of suffocation and/or respiratory failure and/or malnutrition unless put on a feeding tube and breathing support.
Our father (Mr. Surendra Kumar Narula) was diagnosed with ALS in August 2016 (with symptom onset in 2015) and ever since then, it has changed the life of our entire family. Due to the respiratory failure in May 2019, he was tracheostomized and was put on permanent breathing support (mechanical ventilator) at the hospital. Moreover, complications in ICU led to uncontrollable seizure episodes, and infection in the lungs (Klebsiella Pneumoniae), treatment of which led to intense financial distress. Since the disease is irreversible, he has to stay like this forever. Therefore, as per the doctor's advice, we took him back home after around three weeks of ICU stay and ever since then we have been caring for him round the clock at our home ICU setup.
He is currently immobile and ventilated through a BiPAP machine connected to a tracheostomy tube that is surgically inserted in his throat/ windpipe/trachea. Moreover, he is fed through a feeding tube (PEG) which was attached to his stomach through surgery in September-2018. Despite all these dependencies, he is fully alert, conscious and responds to "yes-no" type questions by raising his right hand, which still has some mobility left. He also has some control over facial muscles and is able to express emotions. Please see the videos below [with English subtitles (by clicking "cc") if you may like to].
Our father (Mr. Surendra Kumar Narula) was diagnosed with ALS in August 2016 (with symptom onset in 2015) and ever since then, it has changed the life of our entire family. Due to the respiratory failure in May 2019, he was tracheostomized and was put on permanent breathing support (mechanical ventilator) at the hospital. Moreover, complications in ICU led to uncontrollable seizure episodes, and infection in the lungs (Klebsiella Pneumoniae), treatment of which led to intense financial distress. Since the disease is irreversible, he has to stay like this forever. Therefore, as per the doctor's advice, we took him back home after around three weeks of ICU stay and ever since then we have been caring for him round the clock at our home ICU setup.
He is currently immobile and ventilated through a BiPAP machine connected to a tracheostomy tube that is surgically inserted in his throat/ windpipe/trachea. Moreover, he is fed through a feeding tube (PEG) which was attached to his stomach through surgery in September-2018. Despite all these dependencies, he is fully alert, conscious and responds to "yes-no" type questions by raising his right hand, which still has some mobility left. He also has some control over facial muscles and is able to express emotions. Please see the videos below [with English subtitles (by clicking "cc") if you may like to].
As shown in the videos above, he has improved significantly and started responding under uninterrupted 24X7 intensive care at home ICU setup since his discharge from the hospital in June 2019. However, his continued survival requires proper treatment, round the clock observation, regular and throughout suctioning of the tracheostomy tube and its replacement every 4 to 6 weeks, chest physiotherapy, regular PEG tube and urine catheter care, continuous monitoring of vitals and subsequent tweaking of the ventilator parameters, timely feeds, medications, health check-ups and a bunch of qualified and trained nursing personnel with general duty assistants at our home ICU setup. His surgical accessories, consumables, and nursing services for full-time professional caregiving require financial support. Out of these, nursing services alone require approximately 1 Lac Rupees per month for his survival. Our funds have almost exhausted due to recurring expenditures and very expensive management of this disease. We are a middle-class family and I am a Ph.D. student with no more scholarships. We are constantly fighting against all odds to keep our father alive and comfortable for a very long time ever since he was diagnosed in 2016. We can't let our father with a perfectly healthy brain and intellect leave to die due to a lack of funds.
With this campaign, apart from fundraising for my father, I also intend to raise awareness about the ALS. Please share this page as much as you can. At least, it will help people understand the disease.
Please help us in keeping our father staying alive and smiling like ever before.
"ALS SHOULD NOT BE A DEATH SENTENCE"
Please help us in keeping our father staying alive and smiling like ever before.
Harsh Kumar Narula (Son)
Reena T. Narula Juneja (Daughter)
