I have been a member of Brainwaves NI for 25 years and was the Hon. Secretary of the charity for over 20 years. I became involved in the charity when my husband Billy. was diagnosed in 1992 with a very rare brain tumour normally seen only in children. We met with other families at The Royal Victoria Hospital and soon realised the overwhelming need for information and support for patients and their families facing the same uncertain future we faced. We met regularly for two years and in 1994 Brainwaves NI received charitable status.
Unfortunately when Billy’s tumour returned in 1994 the life that we knew and planned for was now gone. Billy went from being an independent man to a dependent one. This was not how we envisaged our life. This is not how it should have been but that was the journey we now found ourselves on. The strength of the charity is that it is managed by patients, carers and our bereaved families and supporting so many families over the years I have realised the privileged position we have been entrusted with.
To understand and support people on the helpline has been truly humbling and all of the committee who have been touched by a brain tumour share an overwhelming desire to support each other, to let others know they are not alone and to accompany them on their brain tumour journey from diagnosis during treatment and aftercare.
This understanding gives our charity a unique insight into the challenges brain tumour patients and their families face. The uniqueness of the charity is that our members are also our friends, some of whom we have known for many years and we know their family, their history, the challenges they have faced and how they have managed to get back some of the life they once had, to all of us in.
Brainwaves they are our fighting warriors and we are humbled by their tenacity. To many Brainwaves NI is not just a charity but an extended family. I especially want to acknowledge the support given to me by son Ruairi, Daughter Clare, Son-in-Law Stewart and three grandchildren Dylan and James who remember their grandfather with love and Will who did not know his grandfather but who carries his name.