My name is Bronwyn and I am Bronte's Mum.

At 14 years old, Bronte is currently the only child in Australia living with ALS/Motor Neurone Disease (MND), and one of only four documented cases worldwide with her particular gene mutation.

Bronte was diagnosed in 2021. There is currently no cure and no treatment for her condition. Despite everything she faces, Bronte remains a bright, funny, kind and thoughtful teenager. She loves British history, dreams of becoming a family lawyer, hopes to get married one day, and talks about having children of her own. Like any teenager, she wants to spend time with friends, enjoy school, travel and make plans for the future.

In recent months her condition has deteriorated significantly. Bronte has lost almost all movement in her body and is now dependent on a motorised wheelchair. She requires overnight breathing support, receives nutrition and medication through a PEG tube, and lives with constant pain, nausea and fatigue. Most nights I need to reposition her multiple times throughout the night to help manage her discomfort. Bronte is still determined to attend school whenever she can, but her MND means she can only manage a few hours each week.

As her Mum, watching the disease progress is heartbreaking. One of the hardest things is supporting Bronte's hopes and dreams while knowing that many of the things she wishes for will likely never be possible. Most nights she tells me she is frightened of dying, and there are no words that can make that fear go away.

I am also the sole parent and full-time carer for Bronte's older brother, Lyndon, who lives with the rare genetic condition Kleefstra syndrome and requires lifelong support.

For many years I have dedicated my entire life to ensuring both of my children receive the love, care and opportunities they deserve. Today, we are asking for support to help make Bronte's world as comfortable, accessible and joyful as possible.

One of our biggest hopes is to transform Bronte's bedroom into a space where she can relax and enjoy being a teenager. As her condition has progressed, she now spends much of her time in her room resting and managing her symptoms.

Her bedroom is small and has never been updated to meet her changing needs. We would love to create a comfortable retreat that feels like a teenager's bedroom rather than a place defined by illness, including new furnishings, air conditioning, improved accessibility and a television so she can enjoy her favourite shows and movies from the comfort of her bed.

Funds raised will also help improve accessibility within our home, including modifications to key living areas such as the kitchen and family room, making it easier for Bronte to navigate in her wheelchair and participate more fully in family life.

In addition, donations will help cover specialist medications and support not fully funded through existing programs, as well as opportunities for Bronte to enjoy special outings, experiences and precious time with family and friends.

Every day matters. Our goal is to make those days as comfortable, meaningful and memorable as possible for Bronte.

From Bronwyn, Lyndon and Bronte