Aisha Nozari
A heartbroken mum has opened up about having to tell her ten-year-old daughter that she won’t live as long as her friends.
Bronwyn Cousins, from Melbourne, explained that her daughter Bronte has Juvenile Onset ALS - a progressive motor neurone disease.
Bronte is the only child in Australia with MND and one of just three worldwide to suffer from the gene mutation - which will worsen over time and affect Bronte’s breathing and movement.
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Watch Bronwyn talk about her daughter's illness below:
Speaking this week to Australia's 7 News, Bronwyn said she was ‘devastated’ when her daughter was diagnosed and confessed it was incredibly hard telling her little girl about her fate.
Because the gene mutation is so rare, Bronwyn isn’t sure how long her daughter will live.
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Bronwyn shared: “We had a really awful conversation over the school holidays, where she came to me and started to ask me questions.
“I had to tell her she will not live as long as her friends will - that was awful, one of the worst things I have ever done.”
The doting mum continued: “I couldn't believe it [when Bronte was diagnosed]. It had been a long testing process. I knew it was MND. I was absolutely devastated, I have a biology degree and I knew what it meant - it was awful.”
Since being diagnosed, Bronte’s breathing has already gotten worse and she spends most of her time in a wheelchair.
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Bronte, who also gets exhausted quickly and struggles to write, is fed nutrition through a tube that’s surgically inserted into her stomach and struggles to keep weight on.
A GoFundMe page has been set up for Bronte, and it reads: “The overwhelming pain of knowing my kind, empathic, huge-hearted, sparkly baby is never going to achieve her ordinary but precious dreams of going to university or getting married hurts so much.”
Through the GoFundMe page, Bronwyn hopes to raise money for medical costs and would also love to be able to bring Bronte to the UK, as she loves British history and Harry Potter.
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The single mum is unable to work because her son, Lyndon, has Kleefstra Syndrome - an intellectual disability that affects 1,500 people worldwide.
Bronwyn added: “I have dedicated my life to giving my children the love, care and support they both need.
“The demands of my caring role and separating from the children’s father three years ago has placed us under acute financial strain.”
Neither Bronte or Lyndon are aware of the exact nature of MND, which Bronwyn hopes will protect their mental health.