Help My Father with Motor Neuron Disease (ALS) Staying Alive | Milaap

Help My Father with Motor Neuron Disease (ALS) Staying Alive

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 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 in 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. 

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. 

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.

"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)

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Ask for an update
14th January 2020
Dear Contributors,

Our respected beloved mother, Mrs. Madhu Bala Narula, passed away on Jan 7th, 2020 morning due to sudden respiratory arrest caused by the combination asthama and pneumonia. She was 57 years old.



Her sudden demise is a big shock to our family. Now we are left alone in our journey to keep our father with ALS staying alive.

Harsh Kumar Narula
Dear Contributors,

Our respected beloved mother, Mrs. Madhu Bala Narula, passed away on Jan 7th, 2020 morning due to sudden respiratory arrest caused by the combination asthama and pneumonia. She was 57 years old.



Her sudden demise is a big shock to our family. Now we are left alone in our journey to keep our father with ALS staying alive.

Harsh Kumar Narula
23rd December 2019
Dear Contributors,

I express my heartfelt thanks for your tremendous support. Our father underwent a tracheostomy tube change on November 30th. With additional precautions and intensive care at home during the heavy winter season, he is doing great. I wanted to share some latest photographs of him.




The smile on our father's face keeps us motivated to provide him the best care and treatment. However, this intensive care is a very expensive professional full-time job. I myself and my sister have personally learned all necessary technical and non-technical aspects of his care including ventilator/BiPAP management and tracheostomy care and have been care-giving him effectively for 12 hours out of 24 hours ever since he was discharged from ICU more than 6 months ago, which has led to 50% cost-cutting in nursing care. However, this has adversely affected our studies and jobs. His expenditures are recurring and approximately ₹ 1 crore is the estimated cost of his nursing care for the next eight years, that too assuming no inflation at all. It doesn't even include the cost of his treatment, medications, surgical supplies, consumables and purchasing /maintenance of life-saving ICU instruments. No wonder ALS patients are left to die as the cost of staying alive is outrageously high and death is much cheaper.

ALS is gruesome and takes its heavy toll on the families, hence it needs public outcry & attention from the Government. The problem is that the disease is so rare and affected families are so busy dealing with the diseases that no one has the time to speak. Therefore, we as a group of 40 odd Indian families affected by ALS from a separate WhatsApp Group called “ALS care & support” are planning to bring this issue to the media & government notice through social media and letters.

Please push hard among your circles and share the campaign page and help us in raising the funds for our Father's cause and spreading awareness about ALS. The campaign upon successful completion will ideally take care of the cost of a ventilator and nursing care for the next 5 months.

Thanks and Regards,
Harsh Kumar Narula
Dear Contributors,

I express my heartfelt thanks for your tremendous support. Our father underwent a tracheostomy tube change on November 30th. With additional precautions and intensive care at home during the heavy winter season, he is doing great. I wanted to share some latest photographs of him.




The smile on our father's face keeps us motivated to provide him the best care and treatment. However, this intensive care is a very expensive professional full-time job. I myself and my sister have personally learned all necessary technical and non-technical aspects of his care including ventilator/BiPAP management and tracheostomy care and have been care-giving him effectively for 12 hours out of 24 hours ever since he was discharged from ICU more than 6 months ago, which has led to 50% cost-cutting in nursing care. However, this has adversely affected our studies and jobs. His expenditures are recurring and approximately ₹ 1 crore is the estimated cost of his nursing care for the next eight years, that too assuming no inflation at all. It doesn't even include the cost of his treatment, medications, surgical supplies, consumables and purchasing /maintenance of life-saving ICU instruments. No wonder ALS patients are left to die as the cost of staying alive is outrageously high and death is much cheaper.

ALS is gruesome and takes its heavy toll on the families, hence it needs public outcry & attention from the Government. The problem is that the disease is so rare and affected families are so busy dealing with the diseases that no one has the time to speak. Therefore, we as a group of 40 odd Indian families affected by ALS from a separate WhatsApp Group called “ALS care & support” are planning to bring this issue to the media & government notice through social media and letters.

Please push hard among your circles and share the campaign page and help us in raising the funds for our Father's cause and spreading awareness about ALS. The campaign upon successful completion will ideally take care of the cost of a ventilator and nursing care for the next 5 months.

Thanks and Regards,
Harsh Kumar Narula
24th November 2019
Dear Supporters,

I thank everyone who contributed to the fundraising for our father. The overall support so far has been wonderful. I wanted to draw your kind attention to the following two important aspects related to the home ICU management of ALS patients.

  • With a patient at home ICU setup, who is breathing through an electronic device that runs 24X7, device failures are not uncommon. Under such circumstances, the patient may suffocate to death unless immediate breathing support through another backup device is provided. These situations can be handled in hospital ICU's instantly due to the immediate availability of another BiPAP/ventilators.

  • Moreover, in a progressive disease like ALS, respiratory muscles get weaker with time and then advanced ventilators are required. Since the rate of disease progression is completely random, it’s impossible to know beforehand when this critical situation will arise.
I'm raising the goal amount of this campaign in order to be able to acquire Trilogy100 ventilator (by Philips) for our father, which can supply much powerful inspiratory pressure above 40 cm-H2O. This will serve as a backup device as well as the advanced ventilator whenever our currently working device (BiPAP-A40) fails to provide enough inspiratory pressure to our father’s lungs to stay breathing. The recent quotation of Trilogy100 can be accessed through this link.

Thanks and Regards,
Harsh Kumar Narula
Dear Supporters,

I thank everyone who contributed to the fundraising for our father. The overall support so far has been wonderful. I wanted to draw your kind attention to the following two important aspects related to the home ICU management of ALS patients.

  • With a patient at home ICU setup, who is breathing through an electronic device that runs 24X7, device failures are not uncommon. Under such circumstances, the patient may suffocate to death unless immediate breathing support through another backup device is provided. These situations can be handled in hospital ICU's instantly due to the immediate availability of another BiPAP/ventilators.

  • Moreover, in a progressive disease like ALS, respiratory muscles get weaker with time and then advanced ventilators are required. Since the rate of disease progression is completely random, it’s impossible to know beforehand when this critical situation will arise.
I'm raising the goal amount of this campaign in order to be able to acquire Trilogy100 ventilator (by Philips) for our father, which can supply much powerful inspiratory pressure above 40 cm-H2O. This will serve as a backup device as well as the advanced ventilator whenever our currently working device (BiPAP-A40) fails to provide enough inspiratory pressure to our father’s lungs to stay breathing. The recent quotation of Trilogy100 can be accessed through this link.

Thanks and Regards,
Harsh Kumar Narula
Content Disclaimer: The facts and opinions, expressed in this fundraiser page are those of the campaign organiser or users, and not Milaap.
Rs.591,152 raised

Goal: Rs.1,000,000

9 Days to go

Beneficiary: Surendra Kumar ... info_outline

Supporters (239)

MB
Manoj donated Rs.3,500
Roopesh
Roopesh donated Rs.200
A
Anonymous donated Rs.1,000

I sincerely pray for you all to get through this phase

A
Anonymous donated Rs.2,500

may God give you get strength to go through this phase.

A
Anonymous donated Rs.2,500
MT
Mrutunjay donated Rs.25,000

Wish Father a fast recovery and more importantly braveness of heart.