Community rallies to help Westfield girl with rare, life-limiting condition

Four-year-old Fia Kent, from Westfield, has Alexander Disease, an extremely rare disorder of the nervous system.

It is a progressive and fatal neurodegenerative disease that mostly affects infants and children.

Fia’s mother, Lian, said her daughter was diagnosed with the condition last April.

She said: “The moment Fia was born I knew something was not quite right. As a baby she was constantly vomiting and didn’t meet her milestones.”

It was not until an MRI scan was done that Fia was diagnosed with Alexander Disease.

Soon afterwards Friends of Fia was set up by the community in Westfield to help Fia’s family. Money was raised to allow the youngster and her family to go on a dream holiday to the USA. It was there that Fia visited a hospital in Philadelphia where a huge research project is under way to try and find a treatment for her condition.

Lian added: “The disease is so rare, there’s only been around 500 people diagnosed since the 1940s.”

The fundraising campaign has also been set up to help pay for Fia’s continued medical needs and house adaptations.

Lian said: “We have been supported so well by our friends, family and community, which led to Friends of Fia. We wouldn’t be where we are without them. When we found out Fia is only with us for a limited time, we were heartbroken. I still often cry and pray that everything will be OK but I always tell myself that good will come out of whatever we have to go through.

“One of my happiest memories from last year was going to Camp Bestival where Fia got to meet the amazing Mr Tumble. Fia really is pure, unconditional love and brings out the best in everyone she meets, especially other children who just love her and have some kind of innate sense that tells them Fia is different and they need to care for her and make her happy.”

The next fundraising event is Fia’s Ball at the Bannatyne Spa Hotel in St Leonards on April 1 from 7pm.

Catherine Demir, family friend and part of Friends of Fia, said: “Lian and her husband, Matt have been amazing through all of this.

“They have had such a heartbreaking diagnosis that they are all living with day in, day out but their approach to this whole situation has been admirable. They refuse to dwell on this diagnosis.

“They are now literally treasuring every moment and every day with their little family. Their positivity has been astounding.

“They were very keen that Friends of Fia was not just about raising money for their precious little girl but also doing something positive for the whole community.

“First and foremost, the group is about raising money for Fia and her family, for making memories and for unforeseen medical expenses or equipment and adaptions. But we are trying to get the community together as well.

“So we arranged for the whole of Westfield School to be invited to Monkey Bizness in Lewes and 247 Taxis very kindly gave us the transport for free.

“Fia recently celebrated her 4th birthday and all her friends were invited to her party. There was a disco in the late afternoon until early evening for all the children in the village.

“At Fia’s Fairy Ball on April 1, there will be an amazing raffle there, including two holidays up for grabs and throughout the evening. After a three course meal there will be the fabulous Randolph Matthews performing.

“All monies raised will be going towards making memories for Fia and her family.”

Tickets for Fia’s Fairy Ball are £43 and can be booked via www.ticketsource.co.uk/fia.

To donate to the family’s campaign visit www.gofundme.com/fofia.

Visit Friends of Fia on Facebook as well at www.facebook.com/fiakent.

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