I am Zameer Khan. I'm a 35 years old simple cheerful guy from Narwar town of Shivpuri district, Madhya Pradesh. I was diagnosed with Motor Neuron Disease (MND) also called Amyotrophic Lateral Sclerosis (ALS) in June 2017. ALS is a progressive disease of the nervous system that affects nerve cells in the brain and spinal cord, causing loss of muscle control. Weakness often starts in the hands, feet or limbs, and then spreads to other parts of the body.
As the disease advances and nerve cells are destroyed, muscles get weaker. Yes, it's the same disease which Great Physicist and Scientist Stephen Hawking had and even today we don't know the cause or have any cure for this Neurodegenerative disease. We have to depend on medical devices and live on life support (feeding tube, ventilator, etc).
I am writing this story of mine through my eyes with an eye-tracking device because the rapidly progressing disease has made me fully paralyzed to such an extent that I have lost my speech and also I can't move. I am afraid that if I don't receive support as soon as possible, my life will be in danger.
I was a Kiosk operator at SBI bank prior to the diagnosis but I could not continue with the job due to my disabilities. My father (died in 2018 due to kidney failure) and brother both are mechanics so we are not financially strong enough to deal with the disease without external support. Ever since my diagnosis, I've been primarily taken care of by my lovely wife, Neelu. We also have a 5 years old son, who keeps us cheerful and encouraging through this journey.
My disease is progressing rapidly and I have begun to have breathing difficulty since my diaphragm muscles are experiencing weakness. My chewing/swallowing muscles are also affected, which puts me at a very high risk of life-threatening aspiration pneumonia. I need a non-invasive ventilator (BiPAP) to protect my lungs from further muscle loss and weakness.
A new basic BiPAP machine costs around INR 1 lakh including a full face mask, tubing, and humidifier. I also need feeding tube placement for better nutrition and to prevent pneumonia. I require support for my ongoing treatment and medicines as well. Being a rare illness, there is a general lack of awareness about ALS and its management in India. Even many qualified doctors don't understand the disease properly and fail to guide ALS patients in the right direction.
ALS Care and Support India (https://linktr.ee/alscasindia) is a pure patient support and patient advocacy group (PAG) where patients and caregivers from India get united and help each other by sharing knowledge and caregiving tips to support each other through this tough journey. They have been guiding me in my treatment and management since the beginning, through whose support we have reached thus far. I wouldn't have known about the existence of eye-tracking devices for communication if I wasn't a part of the group.
Recently ACT for ALS was approved in the USA and UK, which has opened up so many avenues and funds for research to find a cure for ALS. I'm hopeful that if we strive hard for a couple of years, surely we can see the day when ALS is curable and I can breathe on my own!
I have not given up and am determined to fight, live and raise awareness about the disease. I will need your support for my survival. Your generous contribution would be of great help to me and my family. Any contribution will be of immense help. Do contribute and share this crowdfunding fundraiser link with your friends and family. Thank you.