Mother wearing a dress crouched next to son in wheelchair wearing grey jumper and black adaptive pants with little sister on other side in a blue dress

The Rare Wear Story

18-years-old, engaged and a Full Time Mum. An 8 & ½ pound baby at birth, big blue eyes, and a head full of soft hair, my Lloyd was perfect. Of course, all parents view their child as the ‘perfect’ baby or child but I was utterly in love with this perfect bundle of joy.


Fast forward to six months of age, there was something different about this little boy that was just untouchable at that time. Through the big smiles, little yawns and soft cries, this little boy was different. I had a gut-wrenching feeling that something was missing... that missing piece was his milestones. Almost all of Lloyd’s milestones were not met at the ‘expected’ trajectory.


I spent months navigating the health care system in Victoria, Australia. A young, first-time mum with never ending questions and a strong will to find the answer to our little boy’s missing milestones.


After a long 2-year battle, my little boy was diagnosed at 2.5 years of age with ‘Iqsec2 Associated Disorder’ – A rare genetic condition that only he possessed, alongside approximately 250 other confirmed cases worldwide.


With this disorder comes an array of developmental, medical and mobility issues. Lloyd, now 5 years old (2023) is a full-time wheelchair user, completely non-verbal and is cognitively around 8-10 months of age due to his severe intellectual disability that associates with the Iqsec2 Disorder.


As a mum of two children, Lloyd aged 5 and Elsie aged 3, I find it a constant battle to arrive at places on time. Whether this be school (Lloyd is now a big Preppy!), day-care, medical appointment, or the various therapy appointments. Before children, I was never known to be late but now it’s a regular occurrence. But why? Whilst having 2 children under 6, it is always a struggle to have everything to plan, but dressing Lloyd is a major factor into how timely our routine goes and how happy Lloyd is by the time we leave.


Finding clothes for Lloyd that are easy, quick, and comfy has been a challenge since he grew out of his Bonds Zippys back in 2019 at 2 years old. Lloyd is a strong, tall boy but he also has limited mobility, requiring AFOS. He is also incontinent, requiring incontinence aids and has a Nasal Gastric Feeding Tube (Surgery for a PEG Later in 2023).


Lloyd also hates the feeling of clothing gliding over his head and requires gentle care when placing jumpers or hoodies over his head due to his Nasal Gastric Feeding tube (NGT). Lloyd received his first pair of Ankle Foot Orthotics (AFOs) in 2019 and whilst I was so excited for the benefits of his AFOS I was dreading the daily task of putting them on and taking the off as only leggings were a feasible option! Whilst okay on an autumn day, this would not provide enough warmth in Winter, not in Melbourne’s Winter!


This left us with minimal options for clothing.


Until the idea for Rare Wear.


I created my first pair of Rare Wear prototype jeans in 2022 after many ideas and plays with my sewing machine!


The difference this one pair of pants made was ridiculous. It shaved off the 15 minutes in the morning, forgoing the struggle of fitting Lloyd’s pants over his AFOS.


Not long after, in early 2023 I made the Rare Wear Jumper Prototype.


I am not an experienced seamstress or qualified fashionista but just these two prototypes changed my entire world, daily. Easy, effective fashion has not only helped with my time management but has helped keep Lloyd happy.


Rare Wear is built to create ease for Parents and carers of children with various disabilities, whilst keeping the clothing stylish and the children comfortable!

 My passion is to connect and help as many as parents as possible! Welcome to Rare Wear.. A brand to ease the morning rush.


Maya (Founder & CEO RareWear) x


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