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The thing about Jed is the story of extremes, from a diagnosis of a rare disease, to the highs of meeting one of Hollywood’s favourite characters, and then to the crashing lows of losing a friend in the most tragic circumstances. The story tells of how one family make daily choices, all taught to them by their son, who suffers from a rare brain disease, Moyamoya.


Jed was born perfect. He had all of his fingers and toes, and a little button nose. He smelled divine, he had shown all the signs of being a healthy baby boy, and Peter and I had all the dreams and hopes of new parents. We wanted to see him thrive, achieve, and be happy. We didn’t realize, however, that there was an underlying issue for Jed, something insidious, silent, and deadly. What we also didn’t know was that it would change the direction of our lives forever.


Today, Jed is a tallish bloke, standing at 5’9. He is taller than me but relatively average in height when standing next to his peers. He is sandy blonde, has brown eyes, and has an innocent face, primarily due to his lack of concern for the world around him. To look at him, I guess he looks ‘normal.’ He is toned and well-proportioned and has the physic of a powerful 19-year-old man. In terms of mates, Jed has his best friend, Taliah, but aside from the interactions that we have given him, he doesn’t see a group of young people his age regularly.


To get a sense of the real Jed, you need to notice some of the things he does. He occasionally lays his head on my breast, as he has since infancy. Then he might speak, with an innocent, childlike voice, well rounded by the depth of a 19-year-old man, “I love you, mum,” which may take strangers by surprise. When Jed isn’t seeking comfort and starts to talk about the things that interest him, that’s when we can appreciate the depth of his disability. This is when you realize that Jed is something else.

The Thing About Jed

  • Nicola Baker established Moyamoya Australia, after her 19 year old son is afflicted with Moyamoya Disease.

    Jed had his first stroke from this disease at just 11 months old, which affects one in 100,000 and there is very little known about it.

    Nicola established the foundation to provide information, support, and networking to those families who are dealing with this disease.

    Moyamoya Australia offers funding to families to help with some of the costs associated with having a chronically ill family member.

    Moyamoya Australia have also gifted substantially to Macquarie University Neurosciences to assist in training and research of this disease.

    This is Nicola’s first book and she is hoping that her story will give courage and strength to anyone who is going through a difficult time in their lives, either to illness or tragedy.

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