All those who know 24 year old Ali are bowled over by her tenacious spirit, her positivity, her matter-of-factness & lack of drama about her condition. This is all particularly astounding as she has endured so much in her short life. Ali was diagnosed with a rare genetic mutation of her COL1A1 as a child, this was responsible for her developing Arthrochalasia Ehlers Danlos Syndrome, an incurable condition which meant she needed to be fed by a tube directly into her heart from the age of 18. Aside from all the debilitating side effects of Arthrochalasia Ehlers Danlos she has also had her left trapezius muscle rebuilt in major, experimental surgery, stomach reconstruction surgery and survived sepsis 5 times. Recently it was discovered that her bones have been deteriorating for the last year as a result of Osteogenesis Imperfecta Type 3, caused by the genetic mutation. This was unfortunately missed & treatment options for her going forward are limited. The money raised through this Justgiving page will enable any appropriate future private treatment options to help her & adapt her living situation as her mobility declines but also enable further research into Osteogenesis Imperfecta Type 3 and Arthrochalasia Ehlers Danlos Syndrome as well as supporting the charity Attitude is Everything – the disabled musicians charity which Ali has been an Artist Ambassador for.

More about Ali

Despite everything that has been against her Ali has furthered the cause of female and disabled musicians as the lead singer in the indie rock trio the Idealistics. Ali has campaigned to make the music industry a more inclusive and accessible community influenced by the attitude and music of the Manic Street Preachers. Having endured ableism within everyday life and as a musician, Ali is focused on educating the music industry on disability and ending the stigma surrounding artists who are disabled.

In addition to her work in the field of disability Ali is widely known as a persistent animal lover….applying her own determined spirit to horses, ponies and other pets that everyone else has given up on.

We already know that some mobility supports (improved ankle braces called KAFOs) will keep Ali mobile and out of a wheelchair for the moment (£2430), and that a consultation with a specialist in her genetic condition will be in the region of £1000 (to include initial tests and follow up appointment but not treatment)

Please help us all raise funds for Ali – the most deserving of causes.