Bronte's fight against Juvenile MND

I am organising this fundraiser on behalf of my friend Bronwyn, and her daughter Bronte. This is Bronwyn's story:

“My family needs help…

I am a single parent and carer to two beautiful, exceptionally rare children, Bronte aged 10 and Lyndon aged 14.

In June last year, my daughter Bronte was diagnosed with Juvenile Onset ALS (a type of Motor Neurone Disease). She is the only child in Australia with Motor Neurone Disease, and there are only three known cases of Bronte’s gene mutation in the world. There is no treatment or cure, and Motor Neuron Disease is always fatal. As children with MND are so rare we don’t know how long she has, but she struggles to write, spends a lot of time in a wheelchair and is easily exhausted. Her breathing is deteriorating and her voice has changed. Bronte receives some of her nutrition through a PEG (a tube surgically inserted into her stomach) as she struggles to maintain her weight.

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.

In addition to Bronte's condition, my son Lyndon was diagnosed with Kleefstra Syndrome in 2018. There are approximately 1500 people diagnosed worldwide with this complex syndrome.

In order to protect both children’s mental health – and that of their schoolmates and friends - neither child is aware of the exact nature of Bronte’s diagnosis, and I would prefer it remained this way.

I have not been able to work since having Lyndon and 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.

Any donations to help Bronte will be greatly appreciated and will go towards medical costs and appointments (those not covered by NDIS) everyday living expenses, and used to give her the very best quality of life.

Bronte is an avid fan of history and her most treasured wish is to travel to the UK to visit castles and learn more about British history. She adores Harry Potter and is desperate to visit where Harry Potter was made. If we had funds, I would love to organise a trip to the UK as soon as possible so she could do those things whilst she can.”