Every parent wants to give their kids the bets possible Christmas don’t they? But this year we’ll be pulling out all the stops to make it as magical as possible for our daughter Fia and her siblings.
Our fairy loving four year –old can’t wait to join in the nativity play or take part in the carol concert at the church.
Of course she’ll be wearing her beloved wings. Fia is always dressed as a fairy but seeing her dressed like an angel for the nativity will be so poignant.
Because time is running out for Fia. She suffers with a rare incurable disease called Alexanders Disease.
Only 100 children in the word have ever been diagnosed and tragically Fia is one of them.
Over time she won’t be able to walk, speak or swallow as the disease destroys her nervous system.
Children with the condition rarely live past childhood.
We know that means that one day Fia will grow real wings, but we refuse to be sad because she brings us so much joy.
So this Christmas we’re determined to make some special memories…
Ever since she was tiny Fia has loved to wear fairy wings. They are delicate and pretty, but also a reminder of how strong she is.
After all the legend says that a fairy’s wings are made of steel and nothing could be more true with Fia….
She was just three when she was diagnosed last year. But ever since she’d been born my husband Matthew and I had known something wasn’t right.
We had three older children, Fraser, Freddie and Florence so we noticed straight away when Fia failed to reach any of the little milestones they had.
Just little things at first like not wrapping her finger around yours, then not sitting or standing when expected.
Fia also struggled to keep her milk down and gain weight. We were worried sick, but doctors didn’t seem too concerned and suggested we change her milk.
But we knew it was more serious than that and I turned to google desperate for answers.
Her speech was slow and she also struggled to walk without tripping. But everyone told me not to worry.
Fia was such a happy bright little girl. She made everyone smile and she loved dressing up as a fairy.
“I’m a real fairy mummy,’ she’d say every morning flapping her sparkly wings.
But behind my smile, I was concerned and finally when a health visitor agreed Fia was walking strangely she was referred for a scan.
That lead to an MRI and at last we were given the heartbreaking answer – Alexanders Disease.
‘I’ve never heard of it,’ I cried. The consultant explained it was a rare genetic disorder of the nervous system.
The disease destroys the fatty substance that covers nerve endings making it harder for Fia’s brain to send signals.
We were told that over time she would lose the ability to walk, speak, swallow. The disease would eventually claim her life as there was no cure.
‘How long does Fia have,’ I asked. My heart broke when we were told in some cases children live to eight or ten. But it was impossible to say for sure because it’s so rare.
The only thing certain was the one day we would lose our fairy loving Fia.
We needed to make every second of ever day count, not just for Fia, but for our other children too. They adored their sister. We decided it was best to tell them.
‘We all need to be really strong and brave for Fia, but strong people can cry and talk about their feelings,’ Matthew gently explained.
But we decided not to tell Fia. She was too young to understand and we wanted her head to be full of happy thoughts, fairies and fun, like other little girls.
Life became a bur of hospital appointments. I had to give up my job with the local authority and Matthew reduced his hours at work so we could spend more time together.
When news spread a group of mums from school wanted to help. Soon they raised £15,000. We used the money to go to Walt Disney World in Florida.
It was magical. So we decided we wanted to do something special for Fia’s friends.
We arranged to take all the pupils on a day trip to an indoor play centre. Seeing them all laughing and smiling was wonderful and it was our way of saying thank you.
The fundraising hasn’t stopped. When Fia started to use a walking frame we began building a bedroom and wetroom downstairs.
Now Fia sleeps on a hospital bed in the lounge and we’re hoping it won’t be long before the building is complete and she cam move into her new bedroom.
My friends Kim, Becky, Kat and Catherine set up a charity called Friends of Fia. They organized a charity ball with a Fairy theme.
Fia was the star guests and fluttered around the room in her wings beaming with excitement.
Next month we’re taking her to America with the money raised. Scientists there are trying to develop a treatment that might one day be used to cure this awful disease.
Fia will help with the research and we pray that a cure won’t come too late for her.
But the truth is we don’t know what the future holds.
Fia was losing so much weight that earlier this year she had surgery to fit a stomach peg. It means essential nutrients are now pumped straight into her tummy and she is gaining weight.
On Christmas Day she’ll sit to the table for turkey and all the trimmings with us all.
She won’t be able to eat much, but as long as Fia is around we know there will be plenty of Fairy wings and glitter.
So when she swaps her fairy wings for angel wings for the nativity play this Christmas the tears will be ones of joy.
Because this Christmas we really do have everything we could ever wish for. Each other.
To donate to Friends of Fia please visit: