BIG PLANS TO HELP GRACIE

Feature on Gracie Fletcher, who was born with a number of disabilities, including one so rare that there isn't even a name for it.'Parents Garry and Alysha, of Dinmore Place in Blackpool, with their daughters Faith-Rose (6), Hope (3) and 15 month-old Gracie.  PIC BY ROB LOCK'17-10-2011
Feature on Gracie Fletcher, who was born with a number of disabilities, including one so rare that there isn't even a name for it.'Parents Garry and Alysha, of Dinmore Place in Blackpool, with their daughters Faith-Rose (6), Hope (3) and 15 month-old Gracie. PIC BY ROB LOCK'17-10-2011
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THIS family has big plans, inspired by a special little girl.

One-year-old Gracie Fletcher has a condition so rare it doesn’t even have an official name.

But her family, from Grange Park, are determined to create something positive – and have started fund-raising in her name.

Their first event, a family fun day last month, raised £350, and The Dunes pub in South Shore will be holding another fund-raising night on December 8, from 8pm.

This will be followed by a fun day on December 17, between noon and 5pm, at Blackpool Methodist Church Hall, on Scarsdale Avenue, South Shore.

Gracie’s mum Alysha said she could not believe the support the family had received since their story was first featured in The Gazette, just over a month ago. She said: “People have been so kind and quite a few have offered to organise fund-raising events for us.

“It’s great – our mission with Gracie’s Trust is initially to raise £5,000, so we can register as a charity – then we could do so much more.

“Our ambition is to one day open a charity shop, so we can help more parents.

“We want to help parents create sensory rooms, with coloured lights and sounds, as it really does help the children, and also to help them buy the equipment they need.

“We also want to raise money to donate for research into Gracie’s condition, which at the moment is known only as micro duplication 22Q11.2.

“As well as the two fund-raising events over the next few weeks, my mum’s work colleagues at the NHS Pensions Department in Fleetwood have offered to hold a cake sale, and a friend who is a member of a surfing club has offered to do a sea dip for Gracie’s Trust.”

Little Gracie has a heart murmur, which can cause her to stop breathing, as well as curvature of the lower and upper spine. Her palate is affected, and she is lactose and dairy intolerant.

She has to have physiotherapy every day and make regular trips to hospital, where she was already spent much of her short life.

She has to have a special buggy and other equipment, as well as toys to help stimulate her.

But the brave youngster seems to capture the hearts of everyone she meets.

Alysha said: “It makes me so happy my little princess makes other people smile and brings such joy. She is wonderful. And I really hope we can help us make a difference and help other families.”

l For more details about the events, log onto www.facebook.com/gracies.trust or call Alysha on 079300 61669.