Coffee shop named after little girl with rare condition

Yasmine Sobeih and Ahmed Esfandiary-Bilvee, owners of Lily’s Coffee and Ice Cream Bar, in Up Holland, have named the business after Ahmed’s daughter Lily-Mae.

The four-year-old has a condition called cockayne syndrome, an incredibly rare illness that affects one in 500,000 babies.

The disorder is characterised by small stature, microcephaly (small head), developmental delays and premature aging, and it means the toddler can often be mistaken for a baby.

Cockayne syndrome can also be difficult to diagnose early on, as birth weight and head size are often normal, as is a child’s early development - so much so that her mum Sally Hesketh was only told the news when she was one.

Yasmin, who opened the cafe last month, which sells homegrown and locally sourced fresh eco-friendly food such as ice cream and cakes, said they wanted to give something back.

She said: “Lily-Mae’s father obviously works here and he’s worked for my and is a really close family friend.

“Now because of Lily-Mae’s condition we wanted to do something in her name and in honour of Ahmed and his family.

“We’ve also got a charity box here to raise money for Amy and Friends which does a great job for sufferers of cockayne syndrome.”

The Amy and Friends charity was formed to facilitate the support of children and families suffering from cockayne syndrome.

The group consists of sufferers, their parents and siblings, their extended families, family friends, representatives from medical disciplines, non medical therapists and other interested parties.

She added: “We just wanted to give something back to a good cause and thought naming the cafe after Lily-Mae would be a really nice thing to do.”

Lily-Mae’s grandmother Sue Hodson thanked the business for their support.

She said: “I’d just like to thank them for what they’ve done naming the shop after Lily-Mae and for what they’re doing with the charity.”

Lily’s Coffee and Ice Cream Bar will remain open durng lockdown for collection and delivery.

They are offering 20 per cent discount to NHS workers .

For more information, call them on 07885377886.