This is the first in a series of blog posts exploring the resources and organisations available for those suffering from Wegener's Granulomatosis. The first is an organisation with a special place in Alicia's heart - the Willow Foundation.
This is how the Willow foundation explain what they do:
Willow is the only UK charity supporting seriously ill 16 to 40 year olds by providing unique and positive Special Days. We are totally reliant on the generosity of individuals, companies, trusts and foundations to fund our work.
For some their Special Day is a final chance to realise a dream. For others it provides a positive focus away from diagnosis and treatment, boosting confidence and providing the motivation to move forward with their lives. But for all, Special Days are enriching experiences shared with loved ones. They are moments in time that create the memories that will be treasured forever.
Since 1999 Willow has fulfilled more than 10,000 Special Days for young adults living with life-threatening conditions such as cancer, motor neurone disease, cystic fibrosis, muscular dystrophy and Huntington’s disease.
Founded by former Arsenal goalkeeper and TV presenter, Bob Wilson and his wife Megs, Willow is a lasting memorial to their daughter, Anna, who died of cancer aged 31. Anna’s love of life and the enriching experiences of her own Special Days were the charity’s inspiration.
The organisation is special to Alicia because Alicia applied to them for a special day and was granted it.
Alicia loved going to gigs and always looked forward to going away to Leeds music festival every August Bank Holiday. When she became ill in 2005, she was unable to go due to her illness. The following year she wasn't fit enough, nor could she afford to go.
In 2007 the Willow foundation arranged for Alicia to go to the music festival, paid for the tickets, transport and accommodation for the weekend. They even gave Alicia some spending money and a camera to record the day.
Alicia has always been grateful to the organisation for her experience and hopes that others will be able to make use of their services.