Do you remember the day you first started seeing symptoms?
The day that Jed was diagnosed with Moyamoya Disease, we were sitting in a doctors room on the ward at the Children’s Hospital. There were lots of doctors coming in and out, and Jed was playing at my feet. I had my sister in law, and we were told the name Moyamoya. I remember calmly asking “will this kill him” and the answer was “no”. Unfortunately, that was the wrong answer, because the disease is progressive and it kills.

How has the Moyamoya disease affected Jed and your family?
Moyamoya disease has changed the trajectory of our lives. When we were going through the worst of it, Moyamoya Disease took over every aspect of our lives, how we engaged with our community, how we could be involved with our family and friends. It overtook everything. We know that this disease will change for Jed, but we don’t know what that will look like, so we continue to live each and every day with the best of intentions that today is not the day.

Why is it important to have more stories like Jeds out there for the public to understand more about the Moyamoya disease?
It is so important to continue to tell the stories of our Moyamoya Warriors so that we can raise the profile of the disease. Early diagnosis is crucial to the management of the disease and will hopefully prevent Stroke in patients. This is life saving, and so the story telling is also life saving.