Family to walk from Bognor to Brighton in memory of four month old daughter

Harlie-Skyes Tobitt was only four months old when she died last November.

Vulnerable, and born in the middle of a pandemic, Harlie-Skyes spent most of her young life in a hospital bed. Diagnosed with several genetic disorders, doctors were unable to identify the exact condition which eventually led to her death, leaving her family lost and confused.

"That's the thing that's eating us away," said mum Elaine Gray. "And when you look into it, there are millions of conditions out there."

Though heartbroken, 48-year-old Ms Gray and her partner, 40-year-old Trevor Tobitt, are determined to keep Harlie-Skyes' spirit alive. Shortly after their daughter's death, they started a charity designed to raise money for and awareness of the genetic disorders which claimed her life.

Named after the four-month-old girl who inspired it, the charity has already raised £6,000 through the sale of bespoke wax melts on Facebook. Now, they are hoping to raise more with a sponsored thirty mile walk from Bognor pier to Brighton pier this November.

Setting off on November 20, the family will follow the coast east to Brighton, raising money in collection buckets as they go.

"(Losing Harlie-Skyes) was extremely difficult. We just want her name to live on in memory," Ms Gray said.

All money raised will go towards life-saving research and supporting the families of children with genetic disorders.

Joining them will be 30-40 members of the Barnham Spiritualist Centre, of which Ms Gray has been a member for the last three years. Darren Hart, a medium at the Spiritualist Centre, actually came up with the idea for the walk, wanting to find some way to help the charity.

"Elaine told me her whole story and it really touched me. Nobody wishes to lose a child at any age, but definitely not at just 4 months old," he said.

"I have been doing a lot of walking recently and I decided I wanted to do something for her, and the best I could come up with was more walking," he added, laughing.

Even so Ms Gray appreciates the support. Making a difference, she said, is a big part of her healing: "What's keeping me going is the charity, to be honest," she said. "We are helping other families that are in our position, and, at the same time, the charity helps us by keeping us going."

To donate, or take part in the walk, contact the Barnham Spiritualist centre by emailing [email protected]

To find out more about the Harlie-Skyes Charity and buy a bespoke wax melt, click here.