The RareWear Story
Begin Here...
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.
6 Months Later...
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 me at the ‘expected’ trajectory.
Our Diagnostic Odyssey
I (mum) 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.
Life with a Rare Genetic Condition
With this disorder comes an array of developmental, medical and mobility issues. Lloyd, now 6 years old (2024) 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-Associated Disorder.
As a mum of two children, Lloyd aged 6 and Elsie aged 4, I find it a constant battle to arrive at places on time. Whether this be school, 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. That most time-consuming task WAS dressing Lloyd due to his limited mobility.
AFOs/PEGs...
Finding clothes for Lloyd that are easy, quick, and comfy has been a challenge. Lloyd is a strong, tall boy but he also has limited mobility, requiring AFOs. He is also incontinent, requiring incontinence aids and has a PEG Feeding Tube (Prev. Nasal Gastric tube).
In 2019, Lloyd received his first pair of Ankle Foot Orthotics (AFOs), and while I was excited about their benefits, I dreaded the daily task of managing them, as only leggings were feasible and insufficient for Melbourne's winter.
This left us with minimal options for clothing.
RareWear began...
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.
Giving back...
Initially, those two prototypes changed my entire world. 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