Two sisters in Liverpool have organised a unique fashion show dedicated to children and young people with special educational needs and disabilities (SEND). The event, called the 'Dare to be Different SEND Fashion Show', aims to celebrate inclusivity and showcase the creative talents of its participants.
The show is the latest initiative from Linda and Melissa Clarke, founders of the Lumiere charity in Fazakerley. Their work is inspired by Melissa's six-year-old son, Jaxon, who lives with a rare medical condition. The event will take place this Saturday at their specially designed inclusive play centre.
Key Takeaways
- Sisters Linda and Melissa Clarke have launched a SEND fashion show in Liverpool.
- The event celebrates children with special educational needs and disabilities.
- It was inspired by the founders' experience with Kabuki Syndrome.
- The show is hosted at the Lumiere inclusive play centre in Fazakerley.
- Proceeds will support the work of Lumiere charity and its collaborator, Iconic CIC.
A Mission of Inclusion and Celebration
The 'Dare to be Different SEND Fashion Show' was created to provide a platform for young people who often face barriers in mainstream activities. According to co-founder Linda Clarke, 38, the event is about much more than clothing.
"It’s more than just a fashion show. It is a celebration of creativity, individuality and inclusion. It will show the abilities of all of those taking part and allow them to see that everyone can achieve."
This sentiment is central to the mission of Lumiere, the charity the sisters established 18 months ago. The organisation was born from a desire to create supportive environments for families navigating the complexities of raising children with additional needs.
Collaboration for a Cause
To bring the fashion show to life, Lumiere partnered with Iconic CIC, another Liverpool-based organisation. Run by Gemma Gosling and Fern Thompson, Iconic CIC works to challenge stigma in the fashion, beauty, and arts industries. Their focus includes raising awareness for mental health and hidden disabilities, making them a natural partner for this event.
The collaboration ensures that all profits from the fashion show will be reinvested into the community, supporting the ongoing work of both Lumiere and Iconic CIC.
The Inspiration Behind Lumiere
The driving force for the sisters' charity work is Melissa's son, Jaxon. Now six years old, Jaxon was born with Type 2 Kabuki Syndrome, a condition that affects only 10% of individuals with the syndrome. His journey has been marked by significant health challenges, including open-heart surgery as a toddler to repair a hole in his heart.
Jaxon's Journey: The Heart of Lumiere
Jaxon's condition comes with a range of complex medical issues. He has distinctive features common to Kabuki Syndrome, such as long eyelashes and almond-shaped eyes, but also faces ongoing health concerns that require constant care.
Linda explains that Jaxon has lived with a feeding tube to ensure he receives proper nutrition. He is also at risk of sight and hearing loss, has dental problems, and is smaller in stature. An attempt to use growth hormones was halted due to severe side effects. "He’s already been through so much in his little life," Linda said. "But every hurdle has shaped him into the strong, gentle boy we know today. He may be small, but his heart is huge."
Understanding Kabuki Syndrome
- A rare, multi-system genetic disorder.
- Characterised by distinctive facial features and developmental delays.
- Can cause a wide range of health issues, including cardiac problems, skeletal abnormalities, and immune deficiencies.
- Jaxon's Type 2 form of the syndrome is particularly rare.
Jaxon is also prone to infections, meaning a mild illness for others could result in hospitalisation for him. Like many with his condition, he also has underlying ADHD and autism. It was the family's experiences seeking suitable social and play environments for Jaxon that directly led to the creation of Lumiere's flagship project.
Creating a Safe Space: The Lumiere Centre
Recognising a critical gap in community facilities, the sisters opened Lumiere's inclusive Soft Play and Sensory Centre in Fazakerley's Brookfield Drive in April this year. The centre was designed from the ground up to cater to children with additional needs.
"When Jaxon was younger if we took him to play centres and into social settings... he’d feel overwhelmed and over stimulated," Linda explained. "If he had a meltdown, other parents looked and judged."
Hygiene was another major concern, as a simple infection could be dangerous for Jaxon. "Play shouldn’t be a privilege, it should be a right," Linda stated. To address these issues, the Lumiere centre incorporates several key features:
- A Calming Environment: The centre uses pastel colours and softer lighting to create a less stimulating atmosphere for children sensitive to sensory overload.
- Enhanced Hygiene: Play areas are thoroughly cleaned and sanitised between every 90-minute session to protect vulnerable children.
- Trained Staff: All staff members are trained to work with children who have a variety of additional needs and health conditions.
- Family-Focused: The centre provides a space where parents can relax and connect with others, knowing their children are in a safe environment. It also includes a dedicated area for siblings, who can often feel left out.
The unique facility has proven to be a vital resource, attracting families from as far away as Newcastle who lack similar support in their own areas.
Details of the 'Dare to be Different' Fashion Show
The upcoming fashion show will be a culmination of the children's creativity and hard work. Participants, who are all children who use the Lumiere centre, will model clothes they have designed and upcycled themselves. They will also wear new collections from brands Svante and Glamify.
The event will be hosted by Hayley Smallman, a passionate advocate for children with additional needs. The High Sheriff of Merseyside, Billy Hui, will be in attendance to present certificates to every child who takes part.
A key moment will be a talk from Jessica Amy Williams, a model for Zebedee Management and an ambassador for Down's Syndrome. Her presence aims to inspire the children and their families, showing that anything is possible regardless of disability. During the evening, a special piece of artwork by Danielle Rebecca Firth, which chronicles the journey of the Lumiere charity, will also be unveiled.
"Instead of highlighting the negative, it will put a spotlight on everything that’s positive; and show that everyone can dream – and see those dreams come true," Linda added.
The 'Dare to be Different SEND Fashion Show' is scheduled for Saturday, September 28th, from 2 pm to 6 pm at the Lumiere centre. Tickets are available for purchase online.