Hi, my name is Maya, and I’m the proud 26-year-old single mum of two kids- a beautiful little girl Elsie who is 5 and Lloyd , a bright, cheeky, and determined 7-year-old boy who has changed my life in the most profound ways.

We had a 2004 Kia carnival- wheelchair van. It was our lifeline. But the engine has blown. It’s unrepairable- which was purchased via a small fundraiser and my dad (Lloyd's puppa) getting a loan which he is still paying off and will be for a long time.

We’ve exhausted every option.

Now I’m back to manually lifting Lloyd and his chair into my Toyota Prado — a car that simply isn’t safe or suitable anymore. IT consumes hours of our day. I cry in car parks. I throw out my back (I was also recently diagnosed with Level 2 spinal damage). I do what I have to. But I’m scared I can’t keep doing it for much longer.

NDIS will fund the conversion – but not the car itself.

That’s where we need your help.

Lloyd was born on August 21st, 2017 — 8 pounds of perfect. For the first few months, everything felt ordinary. Then milestones stopped coming. He wouldn't making eye contact. He wouldn't reach out or grab toys. Our world shifted.

After two long years of tests and specialists Lloyd received a diagnosis of IQSEC2 Associated Disorder — an ultra-rare, X-linked genetic neurodevelopmental condition caused by a spontaneous mutation, not inherited from either parent. There are fewer than 300 known cases worldwide, and just a handful in Australia. This diagnosis affects every aspect of Lloyd’s development and daily life.

But that wasn’t all. He also lives with a complex range of co-occurring medical conditions, including:

Lloyd requires a wheelchair for all mobility and positioning needs, including safe transport, toileting, feeding, and school participation. He is also heavily reliant on his PEG feeding tube for nutrition and hydration. His care is full-time and highly complex.

He is supported by a multidisciplinary medical and therapy team including neurology, respiratory, gastroenterology, orthopaedics, ophthalmology, feeding and vision specialists, and allied health professionals — physiotherapy, occupational therapy, speech pathology (AAC and feeding), and exercise physiology.

Every day for Lloyd is structured around intensive therapy, positioning, seizure monitoring, and adapting to a world not built for his needs.

Every single thing Lloyd does takes effort. He fights every day to sit up, to reach, to play, to experience the world. I fight every day to make sure he can access that world.

Lloyd uses a full-time wheelchair and attends multiple therapies each week. He is getting heavier. His chair now weighs over 30kg, and Lloyd is 25kg himself. Every single outing means lifting his body and his wheelchair in and out of my car — multiple times a day.

I’m a single 26-year-old mum.

I work tirelessly at SWAN (Syndromes Without A Name), supporting families like ours. I run a small business, RareWear, designing adaptive, inclusive clothing for kids like Lloyd — because I know what it means when nothing fits, not just physically, but emotionally. And I do it all while giving every ounce of myself to my kids — and to a community I care about deeply. I advocate tirelessly for change in the disability space, through advocacy groups, consumer engagement and research. I'm part of two different School councils, Casey Rotary and Advocating for children volunteer groups. I was the Young Citizen of the year for the City of Casey not because I asked for recognition, but because I refuse to stop showing up for our kids.

I have never been good at asking for help. But I am asking now — not for me, but for Lloyd.

Please, help us get back on the road safely. Help me keep showing up — for Lloyd, and for every family like ours.

Something that gives Lloyd the chance to keep experiencing the world — and gives me the ability to keep caring for him without destroying my body.

This van is more than a vehicle.

It’s freedom.

It’s safety.

It’s survival.

If you can donate anything — truly, anything — I would be forever grateful. And if you can’t donate, please share this page. Your voice might be the one that gets us closer.

From one tired, hopeful, fiercely loving mum — thank you.

Thank you for helping me lift Lloyd, one last time.

With love,

Maya, Lloyd and Elsie

Follow Lloyd’s journey here: https://facebook.com/lloydsgdd