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After losing their daughter earlier this year, a Bognor Regis family are walking pier to pier from Bognor to Brighton in an effort to raise money for children with genetic disorders.

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."

Elaine Gray, with partner Trevor Tobitt, 40

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.

Harlie-Skye was only four-months-old when she died.

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