WEBVTT - We kept our baby alive

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<v Speaker 1>From The Australian. His what's on the front. I'm Claire Harvey.

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<v Speaker 1>It's Monday, January twenty. The Federal government has hit trouble

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<v Speaker 1>in its bid to increase tax on superannuation accounts worth

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<v Speaker 1>more than three million dollars. The government needs the Greens

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<v Speaker 1>and at least three Senate crossbenches to pass the bill,

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<v Speaker 1>but most of the crossbencheres have told The Australian they're

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<v Speaker 1>against the change. Several elite universities have refused to accept

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<v Speaker 1>a definition of antisemitism proposed by Holocaust survivors, prompting the

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<v Speaker 1>Federal Government's Envoy on antisemitism, Jillian Siegel, to say she's disappointed.

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<v Speaker 1>For thirty three years, Debbie and Earl Schoenberger have kept

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<v Speaker 1>their daughter Jess alive against all odds. Today what Debbie, Earl,

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<v Speaker 1>their son Ariel and order Jess can teach us all

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<v Speaker 1>about love? Sometimes as a journalist, there are stories you

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<v Speaker 1>keep coming back to in your career, stories that just

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<v Speaker 1>don't want to let you go. In a case of

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<v Speaker 1>Fiona Harari, one of our most senior and experienced writers

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<v Speaker 1>here at The Australian, it's Jess, a young woman who

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<v Speaker 1>with her family has an extraordinary story playing out in

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<v Speaker 1>a suburban home just like every other one. He's Fiona

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<v Speaker 1>reading a little of her latest story about Jess.

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<v Speaker 2>On her most recent birthday, Jess Schoenberger woke to the

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<v Speaker 2>sounds of joy in her balloon forestoon, Sydney bedroom. Her

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<v Speaker 2>celebration loving family gathered around her for a photo and

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<v Speaker 2>produced a bounty of gifts, a David Walliam's book, a

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<v Speaker 2>watermelon scented candle, and a robotic toy Furbie. Then they

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<v Speaker 2>performed a rapper of the Happy Birthday song, hoping to

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<v Speaker 2>disguise the original version, which Jess has never really liked.

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<v Speaker 2>They seem to have succeeded because Jess responded as she

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<v Speaker 2>usually does to moments of delight, widening her eyes, raising

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<v Speaker 2>her brow, and gently grinning, a reaction that elicited even

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<v Speaker 2>more joy from her family. There was a birthday cake two,

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<v Speaker 2>but Jess could not eat that, neither could she play

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<v Speaker 2>with her carefully selected gifts. Yet this November day was

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<v Speaker 2>an occasion not only of happiness, but also of wonder

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<v Speaker 2>and of pride, because in another time, Jess was diagnosed

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<v Speaker 2>with a rare and life limiting genetic condition and doctors

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<v Speaker 2>told her parents she would not see her third birthday. Devastated,

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<v Speaker 2>they set about making the rest of her life safe,

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<v Speaker 2>happy and warm. Encircled by love and supported by a

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<v Speaker 2>growing list of medical aids and medications. She reached her

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<v Speaker 2>first birthday having never crawled. She turned too without uttering

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<v Speaker 2>a word. She turned three. Each birthday was momentous, but

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<v Speaker 2>this one in late twenty twenty four, with a book

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<v Speaker 2>that she had to be read because she cannot read,

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<v Speaker 2>and a scented candle she could not admire, was even

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<v Speaker 2>more special because on this birthday, after three decades of

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<v Speaker 2>intensive care, just turned thirty three.

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<v Speaker 1>There's a picture accompanying Fiona's story, which is live now

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<v Speaker 1>at Beaustralian dot com dot a u slash health. It

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<v Speaker 1>shows Jess, who's a brunette with fair skin, lying on

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<v Speaker 1>her side in bed under brightly colored covers, smiling towards

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<v Speaker 1>the camera. Her mum, Debbie, sits on the bed close

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<v Speaker 1>to the camera, behind Jess's dad Earl and her brother Ariel.

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<v Speaker 1>They're all beaming with delight. Fiona has been doing this

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<v Speaker 1>for a long time and I've learned a lot from

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<v Speaker 1>her over the years about how to deal with contacts.

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<v Speaker 1>She can be tough and dispassionate, especially when she knows

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<v Speaker 1>the subject isn't going to like the story that she's written.

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<v Speaker 1>And Fiona can also be hugely empathetic and compassionate. She's

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<v Speaker 1>a writer in our health section, which means she's constantly

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<v Speaker 1>on the lookout for stories that are about the most

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<v Speaker 1>important subject of all, how we live, how we feel,

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<v Speaker 1>how we look after ourselves and one another. And Fiona

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<v Speaker 1>knew this family story would resonate with our audiences.

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<v Speaker 2>I've sort of known them vaguely over many years, lived

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<v Speaker 2>in the same area, we had family members who were

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<v Speaker 2>at similar schools, and I think, in fact, when Jess

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<v Speaker 2>was really young, I might have even been at a

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<v Speaker 2>birthday party that she was at, and by that point

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<v Speaker 2>already had some pronounced difficulties and was in a wheelchair.

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<v Speaker 2>But I think I really got to know them about

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<v Speaker 2>twelve years ago, when I wrote a story for another

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<v Speaker 2>publication about parents who were raising children who had life

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<v Speaker 2>limiting illnesses, so, in other words, parents raising children who

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<v Speaker 2>were going to die in childhood. I interviewed a number

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<v Speaker 2>of families for that story. I went to a children's

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<v Speaker 2>hospice and in fact, in the course of doing that story,

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<v Speaker 2>one of the children actually died during the period that

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<v Speaker 2>I was doing the interviews. It was an incredibly difficult

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<v Speaker 2>subject to tackle. But what's amazing, I think in Jess's

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<v Speaker 2>case over the past twelve years, is that it seems

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<v Speaker 2>to me that although her life is extremely difficult and contained,

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<v Speaker 2>and it's not probably like the life that anyone most

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<v Speaker 2>of us would ever come across, her story has actually

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<v Speaker 2>become one now, not of dying, but of living. And

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<v Speaker 2>I think that even as I approached her family to

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<v Speaker 2>do this next story now that she's thirty three, I

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<v Speaker 2>really didn't expect this to be such a positive story

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<v Speaker 2>and the warmth and optimism of this family to shine

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<v Speaker 2>so brightly, and that I think is really what's changed,

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<v Speaker 2>I think remarkably now that Jess's thirty three.

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<v Speaker 1>Everything they say this family is about gratitude for Jess,

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<v Speaker 1>about how Jess has taught them something about living and

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<v Speaker 1>about how to seize every day, to seize the moment.

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<v Speaker 1>But they're not shy about admitting that life has been tough,

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<v Speaker 1>are they.

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<v Speaker 2>Not at all? And I think that's what well. It

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<v Speaker 2>certainly makes it easier to interview them, and it makes

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<v Speaker 2>it easier to tell their story to other people. They

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<v Speaker 2>do have extremely restrained lives. When Jess was born, there

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<v Speaker 2>was no way of knowing that the parents carry this

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<v Speaker 2>gene that has caused her to have Canivan disease. But

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<v Speaker 2>by the time her brother came along, they were able

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<v Speaker 2>to do some testing to make sure that he wasn't

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<v Speaker 2>also born with it, so they're fully aware of what

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<v Speaker 2>they deal with. But the fact that Jess is here

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<v Speaker 2>at thirty three is basically testament to the fact that

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<v Speaker 2>her parents have been able to get together a group

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<v Speaker 2>of people very much steered by Debbie and Earl Jess's parents,

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<v Speaker 2>who are literally beside Jess around the clock. Because Jess

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<v Speaker 2>cannot swallow, the biggest risk to her life at thirty

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<v Speaker 2>three is that she might asphyxiate because she can't swallow

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<v Speaker 2>her salivas. So they have people with her not only constantly,

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<v Speaker 2>but they have to have people who have to suction

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<v Speaker 2>her constantly. But in between, you know, moving her and

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<v Speaker 2>doing all the things that they need to keep her alive,

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<v Speaker 2>there is so much effort put into making her life,

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<v Speaker 2>which is very contained, as joyous as possible, and in fact,

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<v Speaker 2>Earl said that his benchmark for every day is did

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<v Speaker 2>Jess laugh today? And pretty much every day they get

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<v Speaker 2>some laughter out of her. And you go into a

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<v Speaker 2>story like this not knowing what you'll see, not knowing

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<v Speaker 2>what to expect, and when you see how limited Jess

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<v Speaker 2>is in terms of her movements, you can see her

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<v Speaker 2>the expressions in her face that she does express joy,

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<v Speaker 2>which is a really beautiful thing. Her mum loves to,

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<v Speaker 2>for example, squeeze rubbish in front of her, or ring

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<v Speaker 2>bells or make really silly animal sounds, and you can

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<v Speaker 2>see from Jess's face her joy in that. So they

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<v Speaker 2>make it so much easier to talk about their lives

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<v Speaker 2>because they're so honest about it. But they yes, there

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<v Speaker 2>is a level of a huge level of gratitude that

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<v Speaker 2>I think most of us don't get to witness in

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<v Speaker 2>our everyday lives.

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<v Speaker 1>Coming up the conversation with a specialist, the family will

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<v Speaker 1>never forget and why they've been so determined to keep

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<v Speaker 1>Jess smiling. There's a moment that Debbie describes in your

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<v Speaker 1>story before Jess's third birthday of sitting down with a

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<v Speaker 1>specialist who spoke to them in a way that clearly

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<v Speaker 1>to Debbie and Earl sounded extremely harsh and stark. Debbie

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<v Speaker 1>quotes the specialist saying, you're only going to have her

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<v Speaker 1>till she's three. She's not going to walk, she's not

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<v Speaker 1>going to talk, she's not going to sit up. I

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<v Speaker 1>can sort of feel that this specialist might have been

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<v Speaker 1>trying to sort of steal the family's spine, you know,

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<v Speaker 1>to say this will be over soon, trying to be

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<v Speaker 1>kind in this kind of stark delivery of this diagnosis.

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<v Speaker 1>But clearly they didn't see it that way.

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<v Speaker 2>I think the fact that they still remember that encounter

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<v Speaker 2>thirty three years ago so clearly gives you some sense

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<v Speaker 2>of how much it's stung them and continues to.

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<v Speaker 1>To be fair.

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<v Speaker 2>There are so few cases of canneb and disease that

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<v Speaker 2>this doctor probably had never met anyone with it. But

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<v Speaker 2>they were basically delivered this information, and then the doctor

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<v Speaker 2>walked out of the room and said, well, Illa, you

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<v Speaker 2>sit here as long as you want to digest that information.

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<v Speaker 2>He was right in what he said. She didn't walk,

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<v Speaker 2>she didn't talk, she didn't eat. What is extraordinary is

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<v Speaker 2>that she has defied the odds by you know, thirty years.

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<v Speaker 2>But even so, I do under stand the hurt that

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<v Speaker 2>they carry from that conversation, because it is probably the

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<v Speaker 2>most terrible conversation a parent will ever ever hear, and

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<v Speaker 2>to be imparted with that information in a really clinical

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<v Speaker 2>way is probably not the way you would do it today.

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<v Speaker 1>I think it really goes to something that I think

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<v Speaker 1>that runs underneath this story, a current that runs underneath it,

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<v Speaker 1>which is I suppose an old fashioned or maybe conventional

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<v Speaker 1>idea that listen, your lives are going to be easier

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<v Speaker 1>if you just let go a little bit and let

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<v Speaker 1>this baby pass away, let her die, then you can

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<v Speaker 1>move on with your lives. They have spent more than

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<v Speaker 1>three decades actively preventing that from happening, immense self sacrifice.

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<v Speaker 1>Do you do you think that they reflect on that

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<v Speaker 1>choice that they've made, or for them, was it not

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<v Speaker 1>a choice?

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<v Speaker 2>Well, this is their life, Jess is their life. Keeping

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<v Speaker 2>Jess going, making her as comfortable and as happy as possible,

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<v Speaker 2>has become their life. It's interesting because after I interviewed

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<v Speaker 2>them twelve years ago, I would drop in sometimes to

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<v Speaker 2>visit them afterwards. I don't often stay in contact with

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<v Speaker 2>people after stories, but I felt that I wanted to

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<v Speaker 2>see how she was doing, and sometimes I would drive

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<v Speaker 2>past their area and think they're still there every day,

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<v Speaker 2>you know, doing these remarkable things for their daughter with

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<v Speaker 2>so much love. And then to be able to step

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<v Speaker 2>back into their home again after twelve years, and the

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<v Speaker 2>absolute joy that Debbie greeted me with. I interviewed her

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<v Speaker 2>late last year, just after gestioned thirty three, and she said, honestly,

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<v Speaker 2>I just want to dance. I'm so happy. This is

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<v Speaker 2>just the most amazing thing that our daughter is here

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<v Speaker 2>at thirty three. I think what this family in this

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<v Speaker 2>story have made me realize is that you shouldn't judge

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<v Speaker 2>someone by how they look or what you think the

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<v Speaker 2>circumstances of their life might be, because you know, love

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<v Speaker 2>appears in many different guys and it has some truly

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<v Speaker 2>remarkable outcomes. And I think this family is a testament

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<v Speaker 2>to you can live a different life. You cannot go

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<v Speaker 2>very far, but you can produce a tribe of remarkable

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<v Speaker 2>people with their hearts in the best places.

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<v Speaker 1>Fiona Harari is a senior writer with The Australian. You

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<v Speaker 1>can read her story and all the rest of our

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<v Speaker 1>journalism about health and everything else right now at The

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<v Speaker 1>Australian dot com dot au