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We kept our baby alive · The Front

• 0:04
  Speaker 1: From The Australian. His what's on the front. I'm Claire Harvey.
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  Speaker 1: It's Monday, January twenty. The Federal government has hit trouble
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  Speaker 1: in its bid to increase tax on superannuation accounts worth
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  Speaker 1: more than three million dollars. The government needs the Greens
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  Speaker 1: and at least three Senate crossbenches to pass the bill,
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  Speaker 1: but most of the crossbencheres have told The Australian they're
• 0:27
  Speaker 1: against the change. Several elite universities have refused to accept
• 0:36
  Speaker 1: a definition of antisemitism proposed by Holocaust survivors, prompting the
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  Speaker 1: Federal Government's Envoy on antisemitism, Jillian Siegel, to say she's disappointed.
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  Speaker 1: For thirty three years, Debbie and Earl Schoenberger have kept
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  Speaker 1: their daughter Jess alive against all odds. Today what Debbie, Earl,
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  Speaker 1: their son Ariel and order Jess can teach us all
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  Speaker 1: about love? Sometimes as a journalist, there are stories you
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  Speaker 1: keep coming back to in your career, stories that just
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  Speaker 1: don't want to let you go. In a case of
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  Speaker 1: Fiona Harari, one of our most senior and experienced writers
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  Speaker 1: here at The Australian, it's Jess, a young woman who
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  Speaker 1: with her family has an extraordinary story playing out in
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  Speaker 1: a suburban home just like every other one. He's Fiona
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  Speaker 1: reading a little of her latest story about Jess.
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  Speaker 2: On her most recent birthday, Jess Schoenberger woke to the
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  Speaker 2: sounds of joy in her balloon forestoon, Sydney bedroom. Her
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  Speaker 2: celebration loving family gathered around her for a photo and
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  Speaker 2: produced a bounty of gifts, a David Walliam's book, a
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  Speaker 2: watermelon scented candle, and a robotic toy Furbie. Then they
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  Speaker 2: performed a rapper of the Happy Birthday song, hoping to
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  Speaker 2: disguise the original version, which Jess has never really liked.
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  Speaker 2: They seem to have succeeded because Jess responded as she
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  Speaker 2: usually does to moments of delight, widening her eyes, raising
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  Speaker 2: her brow, and gently grinning, a reaction that elicited even
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  Speaker 2: more joy from her family. There was a birthday cake two,
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  Speaker 2: but Jess could not eat that, neither could she play
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  Speaker 2: with her carefully selected gifts. Yet this November day was
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  Speaker 2: an occasion not only of happiness, but also of wonder
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  Speaker 2: and of pride, because in another time, Jess was diagnosed
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  Speaker 2: with a rare and life limiting genetic condition and doctors
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  Speaker 2: told her parents she would not see her third birthday. Devastated,
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  Speaker 2: they set about making the rest of her life safe,
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  Speaker 2: happy and warm. Encircled by love and supported by a
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  Speaker 2: growing list of medical aids and medications. She reached her
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  Speaker 2: first birthday having never crawled. She turned too without uttering
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  Speaker 2: a word. She turned three. Each birthday was momentous, but
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  Speaker 2: this one in late twenty twenty four, with a book
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  Speaker 2: that she had to be read because she cannot read,
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  Speaker 2: and a scented candle she could not admire, was even
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  Speaker 2: more special because on this birthday, after three decades of
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  Speaker 2: intensive care, just turned thirty three.
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  Speaker 1: There's a picture accompanying Fiona's story, which is live now
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  Speaker 1: at Beaustralian dot com dot a u slash health. It
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  Speaker 1: shows Jess, who's a brunette with fair skin, lying on
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  Speaker 1: her side in bed under brightly colored covers, smiling towards
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  Speaker 1: the camera. Her mum, Debbie, sits on the bed close
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  Speaker 1: to the camera, behind Jess's dad Earl and her brother Ariel.
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  Speaker 1: They're all beaming with delight. Fiona has been doing this
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  Speaker 1: for a long time and I've learned a lot from
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  Speaker 1: her over the years about how to deal with contacts.
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  Speaker 1: She can be tough and dispassionate, especially when she knows
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  Speaker 1: the subject isn't going to like the story that she's written.
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  Speaker 1: And Fiona can also be hugely empathetic and compassionate. She's
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  Speaker 1: a writer in our health section, which means she's constantly
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  Speaker 1: on the lookout for stories that are about the most
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  Speaker 1: important subject of all, how we live, how we feel,
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  Speaker 1: how we look after ourselves and one another. And Fiona
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  Speaker 1: knew this family story would resonate with our audiences.
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  Speaker 2: I've sort of known them vaguely over many years, lived
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  Speaker 2: in the same area, we had family members who were
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  Speaker 2: at similar schools, and I think, in fact, when Jess
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  Speaker 2: was really young, I might have even been at a
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  Speaker 2: birthday party that she was at, and by that point
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  Speaker 2: already had some pronounced difficulties and was in a wheelchair.
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  Speaker 2: But I think I really got to know them about
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  Speaker 2: twelve years ago, when I wrote a story for another
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  Speaker 2: publication about parents who were raising children who had life
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  Speaker 2: limiting illnesses, so, in other words, parents raising children who
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  Speaker 2: were going to die in childhood. I interviewed a number
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  Speaker 2: of families for that story. I went to a children's
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  Speaker 2: hospice and in fact, in the course of doing that story,
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  Speaker 2: one of the children actually died during the period that
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  Speaker 2: I was doing the interviews. It was an incredibly difficult
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  Speaker 2: subject to tackle. But what's amazing, I think in Jess's
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  Speaker 2: case over the past twelve years, is that it seems
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  Speaker 2: to me that although her life is extremely difficult and contained,
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  Speaker 2: and it's not probably like the life that anyone most
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  Speaker 2: of us would ever come across, her story has actually
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  Speaker 2: become one now, not of dying, but of living. And
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  Speaker 2: I think that even as I approached her family to
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  Speaker 2: do this next story now that she's thirty three, I
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  Speaker 2: really didn't expect this to be such a positive story
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  Speaker 2: and the warmth and optimism of this family to shine
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  Speaker 2: so brightly, and that I think is really what's changed,
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  Speaker 2: I think remarkably now that Jess's thirty three.
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  Speaker 1: Everything they say this family is about gratitude for Jess,
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  Speaker 1: about how Jess has taught them something about living and
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  Speaker 1: about how to seize every day, to seize the moment.
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  Speaker 1: But they're not shy about admitting that life has been tough,
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  Speaker 1: are they.
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  Speaker 2: Not at all? And I think that's what well. It
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  Speaker 2: certainly makes it easier to interview them, and it makes
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  Speaker 2: it easier to tell their story to other people. They
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  Speaker 2: do have extremely restrained lives. When Jess was born, there
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  Speaker 2: was no way of knowing that the parents carry this
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  Speaker 2: gene that has caused her to have Canivan disease. But
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  Speaker 2: by the time her brother came along, they were able
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  Speaker 2: to do some testing to make sure that he wasn't
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  Speaker 2: also born with it, so they're fully aware of what
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  Speaker 2: they deal with. But the fact that Jess is here
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  Speaker 2: at thirty three is basically testament to the fact that
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  Speaker 2: her parents have been able to get together a group
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  Speaker 2: of people very much steered by Debbie and Earl Jess's parents,
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  Speaker 2: who are literally beside Jess around the clock. Because Jess
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  Speaker 2: cannot swallow, the biggest risk to her life at thirty
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  Speaker 2: three is that she might asphyxiate because she can't swallow
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  Speaker 2: her salivas. So they have people with her not only constantly,
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  Speaker 2: but they have to have people who have to suction
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  Speaker 2: her constantly. But in between, you know, moving her and
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  Speaker 2: doing all the things that they need to keep her alive,
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  Speaker 2: there is so much effort put into making her life,
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  Speaker 2: which is very contained, as joyous as possible, and in fact,
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  Speaker 2: Earl said that his benchmark for every day is did
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  Speaker 2: Jess laugh today? And pretty much every day they get
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  Speaker 2: some laughter out of her. And you go into a
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  Speaker 2: story like this not knowing what you'll see, not knowing
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  Speaker 2: what to expect, and when you see how limited Jess
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  Speaker 2: is in terms of her movements, you can see her
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  Speaker 2: the expressions in her face that she does express joy,
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  Speaker 2: which is a really beautiful thing. Her mum loves to,
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  Speaker 2: for example, squeeze rubbish in front of her, or ring
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  Speaker 2: bells or make really silly animal sounds, and you can
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  Speaker 2: see from Jess's face her joy in that. So they
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  Speaker 2: make it so much easier to talk about their lives
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  Speaker 2: because they're so honest about it. But they yes, there
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  Speaker 2: is a level of a huge level of gratitude that
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  Speaker 2: I think most of us don't get to witness in
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  Speaker 2: our everyday lives.
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  Speaker 1: Coming up the conversation with a specialist, the family will
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  Speaker 1: never forget and why they've been so determined to keep
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  Speaker 1: Jess smiling. There's a moment that Debbie describes in your
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  Speaker 1: story before Jess's third birthday of sitting down with a
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  Speaker 1: specialist who spoke to them in a way that clearly
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  Speaker 1: to Debbie and Earl sounded extremely harsh and stark. Debbie
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  Speaker 1: quotes the specialist saying, you're only going to have her
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  Speaker 1: till she's three. She's not going to walk, she's not
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  Speaker 1: going to talk, she's not going to sit up. I
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  Speaker 1: can sort of feel that this specialist might have been
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  Speaker 1: trying to sort of steal the family's spine, you know,
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  Speaker 1: to say this will be over soon, trying to be
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  Speaker 1: kind in this kind of stark delivery of this diagnosis.
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  Speaker 1: But clearly they didn't see it that way.
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  Speaker 2: I think the fact that they still remember that encounter
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  Speaker 2: thirty three years ago so clearly gives you some sense
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  Speaker 2: of how much it's stung them and continues to.
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  Speaker 1: To be fair.
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  Speaker 2: There are so few cases of canneb and disease that
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  Speaker 2: this doctor probably had never met anyone with it. But
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  Speaker 2: they were basically delivered this information, and then the doctor
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  Speaker 2: walked out of the room and said, well, Illa, you
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  Speaker 2: sit here as long as you want to digest that information.
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  Speaker 2: He was right in what he said. She didn't walk,
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  Speaker 2: she didn't talk, she didn't eat. What is extraordinary is
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  Speaker 2: that she has defied the odds by you know, thirty years.
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  Speaker 2: But even so, I do under stand the hurt that
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  Speaker 2: they carry from that conversation, because it is probably the
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  Speaker 2: most terrible conversation a parent will ever ever hear, and
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  Speaker 2: to be imparted with that information in a really clinical
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  Speaker 2: way is probably not the way you would do it today.
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  Speaker 1: I think it really goes to something that I think
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  Speaker 1: that runs underneath this story, a current that runs underneath it,
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  Speaker 1: which is I suppose an old fashioned or maybe conventional
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  Speaker 1: idea that listen, your lives are going to be easier
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  Speaker 1: if you just let go a little bit and let
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  Speaker 1: this baby pass away, let her die, then you can
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  Speaker 1: move on with your lives. They have spent more than
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  Speaker 1: three decades actively preventing that from happening, immense self sacrifice.
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  Speaker 1: Do you do you think that they reflect on that
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  Speaker 1: choice that they've made, or for them, was it not
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  Speaker 1: a choice?
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  Speaker 2: Well, this is their life, Jess is their life. Keeping
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  Speaker 2: Jess going, making her as comfortable and as happy as possible,
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  Speaker 2: has become their life. It's interesting because after I interviewed
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  Speaker 2: them twelve years ago, I would drop in sometimes to
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  Speaker 2: visit them afterwards. I don't often stay in contact with
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  Speaker 2: people after stories, but I felt that I wanted to
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  Speaker 2: see how she was doing, and sometimes I would drive
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  Speaker 2: past their area and think they're still there every day,
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  Speaker 2: you know, doing these remarkable things for their daughter with
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  Speaker 2: so much love. And then to be able to step
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  Speaker 2: back into their home again after twelve years, and the
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  Speaker 2: absolute joy that Debbie greeted me with. I interviewed her
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  Speaker 2: late last year, just after gestioned thirty three, and she said, honestly,
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  Speaker 2: I just want to dance. I'm so happy. This is
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  Speaker 2: just the most amazing thing that our daughter is here
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  Speaker 2: at thirty three. I think what this family in this
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  Speaker 2: story have made me realize is that you shouldn't judge
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  Speaker 2: someone by how they look or what you think the
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  Speaker 2: circumstances of their life might be, because you know, love
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  Speaker 2: appears in many different guys and it has some truly
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  Speaker 2: remarkable outcomes. And I think this family is a testament
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  Speaker 2: to you can live a different life. You cannot go
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  Speaker 2: very far, but you can produce a tribe of remarkable
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  Speaker 2: people with their hearts in the best places.
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  Speaker 1: Fiona Harari is a senior writer with The Australian. You
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  Speaker 1: can read her story and all the rest of our
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  Speaker 1: journalism about health and everything else right now at The
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  Speaker 1: Australian dot com dot au