Inspiring Macquarie student battles Mitochondrial Disease

Nicholas with his assistance dog in training, Raddie

Nicholas with his assistance dog in training, Raddie

Macquarie law student Nicholas Deen-Cowell has faced some devastating health challenges throughout his young life, culminating with the diagnosis of Mitochondrial Disease two years ago.

Mitochondrial Disease is a genetic disorder that effects the functioning of mitochondria, which are responsible for producing energy for cells to function throughout the body. As a result of the disease, people with ‘Mito’ experience multiple organ dysfunction in various organs at any age.

“I have a specific form of the disease known as MELAS, which has affected me throughout my life, but was only properly diagnosed about two years ago. There was a progression of new symptoms at different stages of my life, but were most particularly felt after I started university,” Nicholas explains.

“The related conditions I have are stroke-like episodes which impact my vision and cause vision loss, type 1 diabetes, epilepsy, high-tone hearing loss, coeliac disease, lactose intolerance and osteoporosis. I also experience exercise intolerance and general fatigue.”

Despite these serious health conditions, Nicholas is determined to complete his studies, in which he’s achieving outstanding results.

“I am currently studying law in the juris doctor program,” Nicholas says.
“Although studying law has been a challenge, I have generally found Macquarie to be a good fit for my needs. I like the flexibility that Macquarie offers in terms of lecture recordings and the ability to study externally if needed, and for the most part my teachers have been willing to adapt assessments when required. Campus Wellbeing has been a good resource for me regarding disability support, organising a disability parking permit, planning assignment extensions and writing to teachers on my behalf.”

This week is Global Mitochondrial Disease Awareness Week and the most important thing Nicholas would like people to know is that it is an extremely variable disease, which can be socially isolating.

“Things can change very quickly, and it is difficult to predict when a serious event may occur. Additionally, it is a very difficult process to receive an official diagnosis, and not much is known about the disease, even among the medical community. This is why it is vital to raise awareness among the community,” Nicholas says.

“I have found that Mito is socially isolating. It is not easy to explain the condition, and it seems that not many people (especially those around my age) would be willing to accept the responsibilities required to make sure I’m ok in the event that something goes wrong. It takes a great deal of trust for me to feel completely comfortable in social activities.”

The Australian Mitochondrial Disease Foundation is currently hosting its annual Bloody Long Walk fundraising events in capital cities – a 35km challenge to cure Mito. To register or sponsor, click here. For more information on Mitochondrial Disease, click here.

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