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Mum releases second book based on sons with rare genetic condition Usher Syndrome

Precious gift: Julianne Schmid reads her latest published book Shine Brighter to her sons Will, Hugo and Callen. The book was inspired by Will and Hugo’s diagnosis with Usher Syndrome, a rare genetic disorder that causes permanent hearing loss and blindness. Photo: Julianne Schmid

JULIANNE Schmid has spent the past few years preparing her sons, who were born deaf, to hear the world differently.

The Mackay Catholic mum even wrote a book on the daily life of her two boys, titled Bill and Hug – A Dragon’s Tale, which explores the experience of two sibling dragons with hearing aids.

But the mum from St Brendan’s Church, Mackay, is navigating a new challenge – preparing her sons to see the world differently too.

In August 2018, Will and Hugo were diagnosed with Usher Syndrome 2C, a sub-group of a rare genetic condition that causes hearing loss and deterioration of vision.

The boys have been using hearing aids since they were several weeks old, after not passing the Queensland Government’s free hearing screen but, due to Usher Syndrome, will most likely be legally blind by the time they are adults.

The particular strain of their condition is so rare that Mrs Schmid and her husband Peter were unaware they were carriers of the gene.

“We’re yet to meet another 2C in Australia,” Mrs Schmid said.

Though Usher Syndrome was not life-threatening or life-shortening, Mrs Schmid said there was a large stigma attached to the condition.

“I think it’s just because one sense is already compromised, then a second sense they learn to rely on becomes compromised as well, so a lot of people see that as cruel; they don’t think it’s the responsible thing for parents to do to a child,” Mrs Schmid said.

She even experienced a negative attitude in the health sector.

When the Schmids received Hugo and Will’s genetic testing results, they were nine weeks pregnant with their third child.

“The fact we were already pregnant was a shock to the genetic counsellor,” Mrs Schmid said.

They were told about a test for Usher Syndrome that could be performed in utero, with the option to terminate the pregnancy if the results came back positive.

“I thought, what was the point in testing in utero, because abortion was not an option for us,” she said.

“It was our choice to have that little life. 

“Maybe it was my Catholic upbringing, but I felt responsible for this little person and wanted to give them the best life I could.

“The most confronting part to me was my other two children weren’t being valued. 

“The fact that they were throwing that (abortion) around, what about the two children I’ve already got? What value does that have on them?”

For Mrs Schmid, Hugo and Will have eternal value, a life given to them by God.

“I feel I’ve been given these children for a reason. It may not ever reveal itself to me, but I do worry about the day they might question, ‘Why them?’, ‘Why has God made me this way?’, ‘If the Bible says God can heal the deaf and blind, why hasn’t God healed me?’ 

“I don’t know how I will respond at this particular time. 

“A part of me thinks, ‘Why not you? You’ve been given a family that can support you and help you grow’. 

“But I think I would be angry too, but for my own faith, I feel like everything happens for a reason.”

One of those reasons could be the second book Mrs Schmid has released.

A month after her boys’ Usher Syndrome diagnosis, Mrs Schmid and her husband travelled to Melbourne to attend a conference for families of children with the condition.

On the plane ride home, Mrs Schmid brainstormed a second book to help raise awareness of Usher Syndrome.

She released her book Shine Brighter, which she also illustrated, last month.

Mrs Schmid also consulted Guide Dogs Queensland and Vision Australia to ensure the book was appropriate for a low-vision audience.

The book’s protagonist is a star – chosen because sound doesn’t travel through space – and lives largely in darkness and silence, wearing a cochlear implant and hearing aids.

With the help of the moon, the star begins to find hope (and a pair of glasses to see).

It’s a small reflection of the way Mrs Schmid sees her boys.

“I think the world is still their oyster and they can do whatever they want to do,” she said.

“They may not be able to drive a car but they might be independent in other ways, as far as independence and career is concerned.

“It’s a bit confronting that their future might mean extra assistance; it might mean a guide dog, or walking with a cane, but ultimately I just see them as who they are.

“They just see and hear the world a bit differently.”

A portion of Mrs Schmid’s book sales will be donated to Usher Kids Australia, but she said the story could help any child with a disability or who struggled.

She said she was inspired by people she had met who have Usher Syndrome, though from the more common sub-groups, who have gone on to become successful athletes, engineers and teachers.

She hopes the book could do the same for children with this condition.

“There are amazing options for people who are deaf blind,” she said.

“They can be independent but their independence is different to a hearing and seeing person.”

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