Our little fighter

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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LITTLE Gracie Fletcher likes proving people wrong.

The one-year-old, from Grange Park, was born with several disabilities – one so rare she is only the sixth person to be diagnosed and it does not have an official name.

But, despite being told she would never walk, talk or even roll over, the brave tot’s parents, Garry and Alysha, have not given up hope and are determined she will live her life to the full.

Gracie was born early at 32 weeks, by an emergency Caesarean section, and had to spend more than nine weeks in the special care baby unit.

Her parents realised there was something drastically wrong when she stopped breathing on her first night. They were told the next 48 hours were crucial, but the little fighter pulled through.

The rare genetic disorder she was born with is known as micro duplication 22Q11.2 – a reference to the extra chromosome she has.

Gracie’s sisters, Faith-Rose, six and Hope, nearly three, will also have to be tested for the condition.

She has a heart murmur, which can cause her to stop breathing, she has curvature of the lower and upper spine, her pallet is affected – meaning she was tube fed for the first few months of her life – and is lactose and dairy intolerant.

Little Gracie has to have physiotherapy every day and make regular trips to hospital, where she has 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 her family – who have set up a fundraising trust in her name to help other families in similar situations – say she is defying the odds.

Mum Alysha, who herself has diabetes, said: “Gracie seems determined to prove everybody wrong.

“She is now starting to talk, she says things like momma and dadda. She can’t sit up, but she can roll over and crawl around, something we were told she wouldn’t be able to do.

“She is very lively and loves to be at the centre of everything.

“She is quite bossy for a one-year-old! She doesn’t seem to let anything affect her.

“When she goes to Brian House for respite care – they are wonderful there – all the staff fight over her.

“We call her our little Tinkerbelle or pixie because the condition has caused her to have pointy ears.

“It makes me so happy that my little princess brings joy to other people and puts a smile on their faces.”

Alysha and Garry have organised a family fun day for Gracie’s Trust, to raise money for parents to buy specialist equipment for their disabled children – like they have had to, and help parents create sensory rooms, with coloured lights and sounds for their youngsters. They also plan to donate money for research into micro duplication 22Q11.2.

Alysha said: “We just want to put something back, we want to help others in similar situations and also raise money for Brian House and other charities which have helped us.”

The fun day will take place on November 5, at St Bernadette’s Church Hall, Bispham, and will include a tombola, raffle, face-painting, stalls and entertainment.

For more details, or if any businesses would like to donate prizes, log onto www.facebook.com/gracies.trust or call Alysha on 079300 61669.