Fia is a real life Christmas Fairy
The angelic four- year old suffers from a rare condition affecting just 100 children worldwide that means she will one day grow real wings and fly to heaven.
But for now her friends and family are determined to pull out all the stops to give this real life Fairy a cracker of a Christmas.
Proud mum Lian said: ‘ Time is running out for Fia, but we refuse to be sad because this Christmas we have everything we could ever want, each other.
‘There is no greater present than that and we will make this a cracker of a Christmas for Fia because we don’t know if it could be her last.’
Last month brave Fia flew to America to help scientists working on developing a cure for Alexander disease.
Her parents know a cure will come too late for Fia for whom the diease is already advanced – but say helping others is a gift they wanted to give after being overwhelmed by love and support since Fia’s shocking diagnosis.
Lian from Hastings said: ‘ Not knowing what the future holds makes this Christmas so poignant for us. But knowing time is running out means we want to make it a cracker for Fia and her siblings who deserve so much happiness.’
Her parents Matthew, 46 and Lian had quickly realised something wasn’t right after Fia was born in February 2013.
She struggled to feed and reach milestones like her three older siblings Fraser, ten, Freddie eight, Florence, six.
But despite this she was always bright and happy.
Lian said: ‘ She loved dressing up and would always put on her bright sparkly wings and tell everyone she was a fairy.
‘She was never without her wings and wand which made us all laugh.’
But despite assurances, Liane was concerned that Fia kept tripping over and eventually she was refereed for an MRI scan.
In 2016 she was finally diagnosed with rare Alexander disease. The consultant explained it was a progressive disease that would affect the nervous system disrupting signals from the brain.
Only 500 people have ever been diagnosed since 1940 and there are just 100 living with the condition now.
Lian said: ‘ We were heartbroken to be told that over time she would lose the ability to speak, walk and swallow before eventually it would claim her life.’
Children with the disease have lived until between eight and ten.
The parents decided not to tell Fia as she was too young to understand. Instead they vowed to fill her short life with as much fairies, fun and magic as possible.
They family took her to Disney World, Florida, where she met Tinkerbelle and declared: ‘ She is a real fairy just like me.’
And back home friends arranged a Fairy Ball to raise money for a downstairs bedroom to be built at the family’s home to accommodate Fia’s hospital bed.
Lean said: ‘ Fia fluttered around flapping her wings and beaming all night. It was magical.’
Earlier this year Fia began struggling to swallow so had surgery to fit a stomach peg and is now tube fed.
So after flying to America to try and help with research last month, the family flew home and vowed this Christmas would be a cracker for their brave real life Fairy.
Lean said: ‘ We are having a huge family Christmas with all the trimmings and we will make sure it is the best one ever for everyone especially Fia.
‘While she can still smile and play we will make her life full of magic and joy like it should be. When she takes part in the nativity as a little Angel I’ll try not to dwell on her growing her real wings.
‘Because for now we have everything we could ever want and that is the best present in the world.’
To help Fia visit gofundme.com/fofia