“We Live Life to the Fullest, Making Memories for All Five of Us.” Our life with a rare disease.

Nicola Baker never stopped being an advocate for her son Jed, from the moment they knew something wasn’t quite right with his health to the diagnosis of Moyamoya disease that came later than it should have. Jed’s life, and subsequently the family’s life, all changed. 

Recently, we were lucky enough to get a glimpse into her and 17 – year old Jed’s world when Nicola shared some of their story with us. Here is what she had to say about the disease and their long journey with it.

“It took us years to receive a diagnosis. The disease presents in 1 in 100,000. In fact, many medical professionals do not know what Moyamoya Disease is. So, we are working hard to get our organisation recognised so that we can raise the profile to ensure faster diagnosis.

It’s a condition that causes narrowing in the arteries of the brain. The brain recognises that it is losing blood flow and sends out little capillaries to rectify this issue. Then, those capillaries look like smoke in an MRI. The disease was first discovered in Japan and the name ‘Moyamoya’ translates from Japanese to ‘Puff of Smoke’. This narrowing can cause stroke or bleed on the brain.

“Our family has adjusted to Jed’s disability, out of necessity.”

“When we first heard of his diagnosis, we were too close to the news that we would have a disabled child. It meant we couldn’t see what the bigger picture could look like. But, as he has grown, and as our family has grown, we have taken each day with its challenges and its triumphs. 

Jed’s younger brother and sister, Charlie and Lucy, have grown up understanding that their big brother needs more help than they do. They have been his advocates. They’ll explain what Moyamoya Disease is to their friends, and teach empathy to those who come into contact with our family. Plus, they are both the first to say ‘Good work, Jed’ when we have had a win. And, of course, they are also very aware of his mortality. 

We all live life to the fullest, making memories for all five of us. One day, if something changes for Jed, we will have had these wonderful, unexpected years.”

A Mother’s Love

When asked how scary it is to experience your child having a stroke and going through surgery, Nicola’s inner strength becomes even more apparent.

“As a mum, you have to manage your emotional responses to situations. I have never shown Jed my terror; I am one of those who cries in the shower, and then I put my superhero mask back on and show Jed my bravery. At one of his brain surgeries, I recall carrying him into theatre on my back. We had to walk past a number of other theatres to get to where we were going, and the doors were all open. Jed was enjoying his horsey ride so much that he was giggling, and the surprised faces of the masked professionals in those open doors has stayed with me.

“I remember thinking, if this is the last time I am with him, then let it be filled with joy and laughter, not with fear and sorrow.” 

“I talked him off to sleep under anaesthetic and told him all about the space adventures he was about to go on. It was calm. Once he was asleep, I allowed myself a moment to cry. Then I put my mask back on, and waited the long wait for his surgery. I have also used this skill in other areas of my life, and it is a gift to me to know that I can be that calm person in a crisis.”

 

 

 

 

 

Above: Jed after surgery, with his mum (left), Jed after his second surgery (right)

 

 

 

 

 

 

 

 

 

Above: The Baker Family (left), Jed at 16 for World Moyamoya Day (right) 

Spreading the Word and Getting Involved

“I would like people to know the word ‘Moyamoya’. To understand that stroke can happen at any age. I would like anyone reading this to look at the Stroke Foundation’s FAST program. This will give them the skills to save someone who is having a stroke.

People can get involved in a number of ways. We have merchandise, and you can now make a Tax Deductable donation to us. You can join our Smokey Blue Rally, or you can bet on a pigeon. Next year, we will be holding the Blue Tie Ball! Any donations of prizes are very eagerly received. And of course, they can simply share our stories.”

You can find more information on the Moyamoya Australia website. 

Read more about the upcoming Smokey Blue Rally HERE. This is an event organised by Moyamoya Australia in support of the disease, to spread awareness, and to celebrate Jed’s 17th birthday. 


 

Read more Families of PakMag blogs HERE.