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

Important: [Feb 5th, 2020] A lot has changed since I started this campaign. Please read the "Updates" section. Our father is shifted from our home ICU setup to hospital ICU due to severe GI infection, septic shock and is critically ill.
[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 ER for further evaluation. Reports were fine and currently being managed at home ICU with 24X7 nursing care, like ever before.

Original Story of the Campaign:

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
11th May 2020
Dear Supporters,

Due to corona virus outbreak and nation wide lockdown, we are taking care of our father completely on our own without any external nursing assistance, so I could not update you since very long. Moreover, we have been facing tough time to acquire his regular surgical supplies.

Today is a very special day for us so I wanted to share with you. Our father completed one year breathing through ventilator today on 11th May 2020. It wouldn't have been possible without your support. Thanks a lot. Keep sharing and supporting us.

Thanks and Regards,
Harsh (Son) and Reena (Daughter)


Dear Supporters,

Due to corona virus outbreak and nation wide lockdown, we are taking care of our father completely on our own without any external nursing assistance, so I could not update you since very long. Moreover, we have been facing tough time to acquire his regular surgical supplies.

Today is a very special day for us so I wanted to share with you. Our father completed one year breathing through ventilator today on 11th May 2020. It wouldn't have been possible without your support. Thanks a lot. Keep sharing and supporting us.

Thanks and Regards,
Harsh (Son) and Reena (Daughter)


2nd March 2020
Dear Supporters,

I want to share the journey of two sisters, Satvinder and Sukhvinder, who cared for their mother (ALS Patient) at their home ICU setup for 8+ years. To raise awareness about ALS  and patient care at home ICU in India, they created the website http://alslifemanagement.weebly.com/ in 2015 and have been actively maintaining it since then.  They are also running  "ALS Care and Support Group" on Whatsapp where affected Indian families like us can mutually share their problems and get answered quickly. They visited our home ICU setup yesterday (March 1st, 2020) to see our father. They shared their own decade long journey dealing with ALS and motivated us to keep going. Here is the photograph from their visit.

 

I insist everyone to go through their website http://alslifemanagement.weebly.com/ . As far as I know, it is the only source of consolidated and authentic information for ALS patient care at home, especially in the Indian context, and it deserves much more attention. Let other affected families in your circle know about this website. Help us in spreading this information further.

Keep sharing and supporting us. You guys are awesome.

Thanks and Regards,
Harsh and Reena
Dear Supporters,

I want to share the journey of two sisters, Satvinder and Sukhvinder, who cared for their mother (ALS Patient) at their home ICU setup for 8+ years. To raise awareness about ALS  and patient care at home ICU in India, they created the website http://alslifemanagement.weebly.com/ in 2015 and have been actively maintaining it since then.  They are also running  "ALS Care and Support Group" on Whatsapp where affected Indian families like us can mutually share their problems and get answered quickly. They visited our home ICU setup yesterday (March 1st, 2020) to see our father. They shared their own decade long journey dealing with ALS and motivated us to keep going. Here is the photograph from their visit.

 

I insist everyone to go through their website http://alslifemanagement.weebly.com/ . As far as I know, it is the only source of consolidated and authentic information for ALS patient care at home, especially in the Indian context, and it deserves much more attention. Let other affected families in your circle know about this website. Help us in spreading this information further.

Keep sharing and supporting us. You guys are awesome.

Thanks and Regards,
Harsh and Reena
18th February 2020
Dear Supporters,

Thanks a lot for your support.

We got our father discharged from the ICU last evening (Monday, Feb 17th, 2020) and shifted to our home ICU. He is much better except lower respiratory tract infection due to colonization of Pseudomonas Aeruginosa (an opportunistic bacteria), which is being treated with antibiotics. We will again present him in the ER after 5 days for further review.

Keep sharing and supporting us. Let's beat ALS.

Thanks and Regards,
Harsh and Reena

Dear Supporters,

Thanks a lot for your support.

We got our father discharged from the ICU last evening (Monday, Feb 17th, 2020) and shifted to our home ICU. He is much better except lower respiratory tract infection due to colonization of Pseudomonas Aeruginosa (an opportunistic bacteria), which is being treated with antibiotics. We will again present him in the ER after 5 days for further review.

Keep sharing and supporting us. Let's beat ALS.

Thanks and Regards,
Harsh and Reena

Rs.1,033,874 raised

Goal: Rs.1,500,000

Beneficiary: Surendra Kumar ... info_outline

Supporters (285)

SS
Suvarchala donated $151
A
Anonymous donated Rs.1,000
A
Anonymous donated Rs.1
MI
Milaap Impact Partner donated Rs.75

Matching payment towards Neha’s contribution

NB
Neha donated Rs.500

Get well soon mausaji

A
Anonymous donated Rs.2,500