A DIAMOND Jubilee concert in aid a 16-year-old girl with a life limiting disease is to take place in Horsham.
On Thursday May 3, the County Times reported on the Horsham resident, Aila Figura, who has Freidreich’s Ataxia, an incurable genetic disease which affects less than two people for every 100,000 in the UK.
The disease slowly stops all mobility in the body, including breathing, and Aila currently struggles to walk a few steps without the use of a crutch.
Aila’s mother, Anneli, of Beaver Close, is determined to provide the best life possible for her daughter and has launched a fund raising drive called ‘Aila’s fund’ to raise £16,000 for an extension so that Aila can use a wheelchair at home.
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 Diamond Jubilee Concert in aid of Aila’s Fund will take place on Friday June 1 at 7.30pm where an assortment of Horsham’s most talented performers will gather at St John the Evangelist Church, in the town center.
A wide variety of music will be heard including performances from The Priests, Gospel Choir, and Voices.
A free glass of wine or soft drink is included in the ticket price of £7.50 for adults, £5 for children/concessions, and £20 for a family.
Tickets are on sale now at St John’s parish office or by calling 01403 253667.