My Story

My name is Harneet and I was diagnosed with Nemaline Myopathy at the age of 3. As a toddler, my mom noticed that when I would fall while walking, I wouldn't stand back up, which led her to take me to a paediatrician who said it appeared I might have a muscular problem. At 3 years old, I had dental surgery and because doctors didn't know about my condition, I didn't wake up from the anesthesia for three days. This is when it was determined I wasn't getting enough oxygen when I slept, and needed mechanical ventilation to help me breathe when sleeping via a BiPap machine with a mask that goes over the nose and mouth. Some time thereafter, I had a muscle biopsy that led to a Nemaline Myopathy diagnosis. 

Nemaline Myopathy is a rare, genetic muscle disorder that primarily affects skeletal muscles, which are muscles that the body uses for movement, and can also affect other organs and body systems. Muscle weakness (myopathy) is typically most severe in the muscles of the face, neck, core, and other muscles close to the centre of the body (proximal muscles), such as those of the upper arms and legs. Weakness of the muscles of breathing and swallowing are major causes of morbidity and mortality.

As I grew older, I slowly began losing my ability to stand up on my own and walk long distances. I had to use a manual wheelchair, and eventually transitioned to a power wheelchair at the age of 7 as my disease progressed. Throughout the past 25 years, I have undergone a total of 13 surgeries/procedures, numerous treatments, blood tests and scans, as well as countless hospital stays. At the age of 18, my respiratory muscles had become so weak that I was constantly out of breath and working extremely hard to breathe, sometimes becoming lightheaded. I then had a tracheostomy placed, a tube inserted into the trachea and connected to a ventilator 24/7 to save my life. Most recently, my stomach and intestinal muscles have become weak, leading to difficulties in digesting food, and I had a gastro-jejunal feeding tube placed that allows me to receive nutrition directly into my intestine. 

Despite the challenges, I live a happy and full life, enjoying every moment. I am currently studying in university and working hard to achieve my goals, while cherishing time with friends, family, and my fur baby! 

Support Us

I am fundraising for A Foundation Building Strength because I want to be part of the change for families facing Nemaline Myopathy. This condition affects muscle strength and daily life in ways most people cannot imagine. I have seen how diagnoses like this can bring fear and uncertainty, and I believe research and better treatments can bring real hope.

A Foundation Building Strength is dedicated to finding treatments for Nemaline Myopathy. Their work supports research, clinical trials, and resources that give families access to the latest science and compassionate care. Every step toward understanding this disease brings us closer to therapies that improve strength, mobility, and quality of life for children and adults living with this condition.

I am raising funds to support this vital mission because no family should face Nemaline Myopathy alone. Your gift will help accelerate research, fund crucial studies, and provide practical support to those who need it most. Together we can move from uncertainty to progress.

Please join me in supporting A Foundation Building Strength. Your donation, large or small, will help bring treatments closer and deliver real hope to families affected by Nemaline Myopathy. Thank you for standing with us.