My name is Laine, and I’m raising funds for my partner Shai, who is bravely living with a rare, degenerative neurological disorder called Leukodystrophy.

Shai is one of the most vibrant and kind-hearted people you could ever meet. They have a contagious laugh, a sharp sense of humour, and a deep love for their pets, musicals, and spending time in nature. They’ve always found peace in the garden, surrounded by their puppies and cat. But over the past few years, Shai’s life has changed drastically.

Shai’s Story

In 2019, I met Shai — a bright, bubbly, and caring soul with a wicked sense of humour, a deep love for musicals, and an even deeper love for their animals and the outdoors. We built a life together, full of laughter, love, and quiet moments spent gardening and napping in the sun with our pets.

But in 2022, everything changed when Shai started to become unwell. At first, the signs were small — some memory issues and changes in speech.

In 2023 Shai began experiencing more symptoms, difficulty moving their right hand and foot, memory issues, and trouble forming sentences. At first, we had no idea what was happening. Within months, the symptoms worsened, and after many medical appointments, Shai received a heartbreaking diagnosis. Leukodystrophy; a rare genetic disorder that slowly damages the brain and nervous system. There is currently no cure or effective treatment, only medications so control symptoms. It is a terminal diagnosis.

By Mid 2023, as Shai’s symptoms progressed and everyday tasks became increasingly difficult, they made the heartbreaking decision to leave Western Australia, where we had built our life together, and move back home to Nimbin, New South Wales, to be closer to their family, unfortunately I could not go with them due to work and other circumstances. It was one of the hardest choices they have ever had to make, but they needed the extra support and care that their family could provide. Being back in Nimbin has allowed them to be surrounded by loved ones and the natural environment they cherish so deeply, but it has also meant limited access to specialised medical care and support services that are more readily available in larger cities.

By the end of 2023 Shai began to use a walking stick to help with their failing mobility in their right leg. It became apparent that Shai would continue to lose more of their mobility each day as we watched them battle to keep their independence to move around unassisted.

By 2024, Shai's condition continued to deteriorate leading to more and more loss of mobility and cognitive function, by mid 2024 their ability to use a walking stick began to diminished and it became apparent Shai would need assistance with their mobility through the use of a wheelchair and also the help from a carer or relative present to help with transfers to and from their bed and the bathroom. As the condition progressed, Shai lost all function in their right arm and both legs, and their speech and memory began to decline further.

By the start of this year (2025), they are now fully reliant on a wheelchair. Shai has entered one of the final stages of their illness which is signified by the onset of daily seizures that are controlled by a concoction of medications which have severe and adverse affects such as increasing Shai's brain fog and cognitive impairment and also inducing fatigue.

The next stages of Shai's illness will likely result in them losing their ability to speak, see, hear and experience any sensation other than pain.

As of today, Shai has lost the ability to walk or move independently. Their core strength is fading, they experience chronic pain, and they now require full-time care, their ability to effectively communicate their needs is heavily impaired due to their memory loss, continued cognitive impairment and brain fog including the use of a hoist and permanent catheter.

Despite all this, Shai’s spirit remains — warm, witty, and full of love.

Life in Rural Nimbin

Unfortunately, living in a rural area also means limited access to medical services, support workers, and mobility equipment.

Shai’s mum Anja, also is suspected to have leukodystrophy and is currently undergoing the same testing as Shai to receive their own diagnosis. Anja is their primary carer, while raising two daughters and working to support the family. It’s an incredibly difficult situation, both emotionally and financially. As it is genetic Shai’s sisters are now being tested too and facing their own challenges.

How You Can Help

We are fundraising to support Shai and their family with:

- Medical and living expenses not covered by NDIS or DSP

- Mobility and care equipment to ensure comfort and safety

- A new tablet so Shai can stay connected, communicate, and use cognitive support apps

- Travel costs so I can visit and assist with their care

- And eventually, funeral expenses, so Shai can rest peacefully in the place they love most - close to family and surrounded by nature.

Every donation, no matter the size, will directly help Shai live the remainder of their life with comfort, dignity, and love.

Thank you for taking the time to read Shai’s story. Your generosity will make an enormous difference to Shai and their family as we face this heartbreaking journey together.

Please consider donating or sharing this campaign to help spread Shai’s story and reach those who can help.

With gratitude,

Laine