ALS: Act. Love. Support. The Mystery Behind the Disease

By Zoe Lalji –

ALS stands for Amyotrophic Lateral Sclerosis and is a progressive neurodegenerative disease that affects two out of every 100,000 people each year. It attacks both the upper and lower motor neurons of the body, slowly robbing the body’s ability to walk, talk, move and breathe on its own and eventually paralyzes those affected by it. You may remember this disease from the 2014 ice bucket challenge or as the disease Stephen Hawking had. The life expectancy is two to five years, depending on the disease’s progression, and scientists have been researching fervently for the last 70 years to find a cure.

Since the disease hits everyone differently, it has been difficult to solidify any sort of root cause, and for this reason, there is no known cause, essentially no treatment and no cure for ALS. So how can we even begin to understand such a complex and mysterious disease – a disease which essentially traps people inside their own bodies? What is the mystery behind the disease?

In reality, we know very little about what ALS does inside the body. ALS is merely a name to describe a collection of symptoms that coincide with no concrete known pathology. This is why it is time for us to come together as a community in the face of such a devastating disease to raise awareness and provide hope and support to suffering patients and their families.

My dad, Dr. Ayeez Lalji, was diagnosed with ALS a few months ago, and ever since then, he has been a beacon of relentless strength, resilience, faith and positivity. He has been nothing short of a warrior through this unbearable hardship and a true inspiration to anyone whose life he touches. Every day presents us with new challenges and new reasons to give up hope, but regardless, my dad, my hero, keeps on fighting, pushing himself to his absolute breaking point, and then some, to fight this battle nobly with grace, humility and gratitude. Every time I look at him, I see this flame in his eyes which never dies no matter how bad things get. In fact, it grows stronger day by day. Despite all that he has lost, my dad remains grateful for the functions he still has and continues to live life courageously every day. He epitomizes strength and “smiling through the pain” better than anyone I’ve ever known or met. My dad has such an immense will to live – not just to survive through this, but to thrive, make a difference and leave his mark on the world.

My mom, Dr. Shelena Lalji, has been another hero in this story. She has spent literally thousands of hours searching, consulting, researching and creating therapies and protocols with the knowledge and information she has gained from hundreds of worldwide experts and studies. She believes, “The cure is out there; we just have to find it!” In addition to doing countless hours of research, she has managed to be the primary caretaker for my dad, mom to Zade and me, doctor to her patients and the ultimate multi-tasker.

Seeing my parents through this journey has humbled my brother and me and has taught us what it really means to never give up and fight with everything we’ve got. Together, they have acquired such a beautiful mission through this, which is to support and generate hope for other ALS patients and their families around the world and show them that ALS does not define them. We will start a movement. Like Martin Luther King, Jr. once said, “I have a dream.”  We have a dream that ALS patients around the world will wake up one day and will be able to walk again, talk again, move again and breathe again –  to take back what this disease has stolen from them.

We would love to have everyone in our community join us in raising awareness. If you or anyone you know has been affected by ALS or any other neurodegenerative disease, please share your stories with us, and join our mission to find a cure. Please email me at zoelalji@gmail.com or visit our website www.ALSHeroes.com.