Mother’s plea to improve her daughter’s limited life

Aila Figura, 16, has Friedreich's Ataxia which affects less than two in 100,000 people in the UK.  Pictured with mum Anneli Figura - photo by Steve Cobb
Aila Figura, 16, has Friedreich's Ataxia which affects less than two in 100,000 people in the UK. Pictured with mum Anneli Figura - photo by Steve Cobb

THE MOTHER of a 16-year-old girl with a life limiting condition is on a mission to provide a happier life for her daughter.

After 14 years of living an ordinary, if not ‘slightly clumsy’ life, Aila Figura, of Beaver Close, Horsham, discovered that she had an incurable disease which affects less than two people for every 100,000 in the UK.

It was at that time two years ago, that Aila’s parents, Anneli, 48, and Edek, 50, were informed that they are both carriers of the genetic disease, Freidreich’s Ataxia.

This life changing knowledge came to Aila after a day at school when she suddenly found that she wasn’t able to write.

“At first, the doctors thought it was muscle sprain but I spent a while trying some stretches they gave me and that didn’t help,” said Aila.

Eventually the teenager was diagnosed with the disease which affects the nervous system and eventually stops all mobility, including breathing.

In the last two years the condition has affected Aila’s speech, eye sight, and balance, and she now struggles to walk a few steps without the use of a crutch.

As Anneli watches her daughter’s health deteriorate, she is growing desperate to make life as easy for Aila as she possibly can, and so she has given up work and is learning to drive in order to care for her.

The devoted mother has also launched a fund raising drive called ‘Aila’s fund’, to raise £16,000 for an extension so that Aila doesn’t have to struggle with the stairs whenever she wants to use the toilet.

Anneli said: “Coping with watching your teenager move from apparently perfect health into a condition of inexorably deteriorating mobility is heartbreaking.

“There are of course all the practical challenges of coping with her condition, and to have to worry about raising money for vital home adaptations on top of all this sometimes feels like the proverbial straw on the camel’s back!”

The first fund raising event will be an acoustic rock night at Saint John’s Evangelist Church Hall, in Springfield Road, Horsham, from 7pm until 11pm, on Saturday May 5.

Tickets are being sold on the door at the church for £5 each or £15 for a family.

Many other fund raising efforts are also under way including wristband selling, a diamond jubilee concert at the church on Friday June 1, and a friend is doing a sponsored cycle from London to John O’Groats.

For more details on the fund raising efforts contact Anneli Figura on 01403 241859 or email anneli@dsl.pipex.com or to donate to Greg Collin’s sponsored cycle visit http://gregcollinslonjog.posterous.com/