Fundraising hopes for family of girl with rare condition

Lily-Mae Esfangiary, from Up Holland, has Cockayne syndrome and is often mistaken for a baby, despite actually being four years old.

Now those closest to her want to hold another money-spinning event similar to those held in the past in aid of Amy and Friends, a Cockayne syndrome support group that has helped in the past.

Grandmother Sue Hodson, 56, said it all depends on the situation with Covid-19 come August, when they would like to hold the fun day.

She said: “We’ve not arranged anything yet. We’d like to do one like normal how we have in the past but we’ve got our hands tied and it depends on the situation.”

In past fun days, the family have put on stalls, singers, dancers, a bouncy castle, raffle and a small auction.

Last year, they had to do a virtual event due to Covid-19 restrictions - but the hope is to do it properly this time.

Sue said: “The fund-raising days have been such a success in the past and hopefully we can go ahead with it this year, ideally at the end of August or beginning of September.”

As well as wanting to organise another fun day, Sue wants to raise awareness of Cockayne syndrome, ahead of Rare Disease Day on February 28.

The incredibly rare illness affects one in 500,000 babies and is characterised by small stature, microcephaly (small head), developmental delays and premature aging.

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 was only told the news when she was one.

Sue said: “We’ve been putting things on Facebook to show people what the affects are of the condition.

“Due to it not being visible, people can’t always tell.

“With us knowing Lily we can see it and know what we’re looking for other people can’t necessarily.

“So we want to raise awareness and get that message out there and support Rare Disease Day.”

And Sue said that Lily continues to “do really well” in living with her condition.

She said: “Lily is being peg fed food and drink and has to attend hospital appointments and physio calls for follow-ups.

“But she’s doing really well and is always smiling and happy.”

Lily-Mae is well-known in Up Holland and has even had a new coffee shop named after her.

Yasmine Sobeih and Ahmed Esfandiary-Bilvee, owners of Lily’s Coffee and Ice Cream Bar, in Up Holland, named the business after her in October as she is Ahmed’s daughter.

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