A challenge to walk and run 200 kilometres in memory of a little girl has grown into a registered Jersey charity supporting families affected by disability and complex medical needs.
Wendy Freitas is the founding director of The Emily Scarlett Foundation – established in memory of her younger sister Emily, who died in 2021 aged three years old.
Alongside running the charity, the 23-year-old runs her own marketing business – but says supporting others has always been at the heart of what she does.
“Life is incredibly busy, and I often find myself juggling my business, the foundation, and everything else that comes with them,” she said.
“But I genuinely wouldn’t have it any other way. The opportunity to give my time to help others is the most rewarding feeling I could ever ask for.”
“Disability was never something unfamiliar to me”
Growing up as a carer shaped Wendy’s outlook from an early age.
“Disability was never something unfamiliar to me, it was part of my everyday life and my ‘norm’,” she said.
“It gave me a deep appreciation for the resilience of individuals living with complex conditions as well as the strength of their families, while also opening my eyes to the barriers and inequalities that unfortunately still exist.”
After Emily’s death, she felt compelled to channel her grief into something positive.
“When my sister Emily passed away, alongside the grief came a renewed sense of purpose,” said Wendy.
“I realised there was so much more I could do to support the community while creating something positive in Emily’s memory.”
“The Emily Scarlett Foundation is about far more than fundraising.
“It’s about creating opportunities, raising awareness, advocating for inclusion, and building a community where disabled people and their families feel supported and empowered.”
“Caring for a child with complex needs truly takes a village”
Emily spent the first year of her life in hospital and lived with epilepsy, cerebral palsy, cystic fibrosis and other complex conditions, which led her to require tube-feeding from an early age.
Despite her medical challenges, Wendy said her sister’s personality is what everyone remembers.
“Emily was love, sass, and sparkle all wrapped up into one little girl. She had the cheekiest and biggest personality that could light up an entire room.”
Wendy hopes Emily’s story helps people better understand the realities facing families caring for children with complex needs.
“If there’s one thing I wish islanders understood, it’s that disability doesn’t just affect one person, it affects an entire family,” she said.
“It’s a journey that begins from the moment a child is born, and it’s one that never really stops. Caring for a child with complex needs truly takes a village.”
She described how her father became a full-time carer almost overnight, learning to use specialist equipment while the family adapted their home and travelled frequently to the UK for treatment.
“What many people don’t see are all the stages in between,” she said. “They don’t always see how physically, emotionally, and financially consuming caring can be, or how exhausting it is to constantly fight to be understood for the support your loved one needs.”
“Support often fades just when it’s needed most”
Wendy also spoke about the period after a loved one’s death.
“When the person you’ve spent years caring for is no longer there, life doesn’t simply go back to normal,” she explained.
“The routines stop, the purpose changes, and families are left navigating a completely different kind of grief. Support often fades just when it’s needed most.”
Wendy channelled her grief into launching ‘Miles for Em’, a fundraising challenge launched in memory of her sister in 2024.
She committed to walking and running 200 kilometres to celebrate Emily’s life while raising money for children in Jersey.
“It certainly wasn’t easy,” said Wendy, explaining that a delayed start and knee injuries made completing the challenge difficult.
“But every time I felt like giving up, I reminded myself why I had started,” she added.
“Compared to everything Emily had endured throughout her life, my challenges were incredibly small.”
The campaign attracted widespread support online and in the community.
“Hundreds of thousands of people followed the journey online, shared Emily’s story, donated, and encouraged me every step of the way,” said Wendy,
“It became so much more than a fundraising challenge; it became a way of bringing people together through kindness, compassion, and Emily’s legacy.”
“Miles for Em was the beginning of something much bigger”
That response inspired Wendy to expand the initiative.
“Looking back, Miles for Em was the beginning of something much bigger than I ever expected, and it ultimately laid the foundations for The Emily Scarlett Foundation,” she explained.
After initially operating as a non-profit organisation, the foundation gained charity status this year.
Today, the charity focuses on raising awareness, encouraging conversations about disability and reinvesting fundraising into Jersey.
Funds are used to support local hospital wards, charities and organisations providing equipment and services for disabled children and families.
The foundation also offers informal support to families navigating disability and serious illness.
“Sometimes people simply need someone to listen, point them in the right direction, or help them access the support that’s available,” said Wendy.
“Our charity is there for anyone in Jersey whose life has been affected by disability or complex medical needs, whether directly or indirectly.”
After running the organisation alone for its first two years, Wendy is now supported by family members and volunteers.
She said: “While not everyone knew Emily personally, every single person involved believes in our mission and genuinely wants to make a difference for children, families, and our wider community.”
“I want Emily’s legacy to continue creating positive change for generations to come”
This year’s Miles for Em event is due to take place on Saturday 12 September.
Participants are invited to walk or run three distances: 5km, 10km, or a half-marathon.
The event is designed to be accessible to participants of all ages and abilities.
“Last year we had participants ranging from less than a year old right through to 80 years young,” said Wendy.
“Whether you’re a keen runner, enjoy a gentle walk, or simply want to be part of something meaningful, everyone is welcome.”
Over the next five years, Wendy hopes The Emily Scarlett Foundation can expand its educational work with schools, workplaces and community groups while continuing to fund projects and services that benefit Jersey families.
“I want Emily’s legacy to continue creating positive change for generations to come,” she said.
“If there is one message I would want people to take away from Emily’s story and the work of the Emily Scarlett Foundation, it is that everyone deserves to feel seen, valued, and included.
“Emily’s story reminds us that every person has value, every life has purpose, and every action can make a difference.”
“Through the foundation, we want to keep Emily’s strength, kindness, and determination alive by continuing to create change and build a community where nobody feels like they have to fight to belong.”
