Do small things beautifully, not big things relentlessly.
We are the siblings, parents, cousins and friends of an inspiring lady, who developed a brain tumour as a 10 year old girl, learned what living with limitations and extra care needs subsequently meant and then courageously faced a second brain tumour in her mid-twenties, which ended her life here with us.
Katie was the oldest child in our family, with three younger siblings. Our parents did the best they could in trying to give their other children as much attention and care as they needed, but the reality of long hospital stays, frequent clinic appointments and coping with their own lost expectaions of life for their daughter, had its impact on her three siblings.
Our sister, Katie, wrote a poem shortly before being diagnosed with the first brain tumour about life being a like a mountain journey. This picture was a very apt description of life for all of us, with different challenges in adjusting to life with extra needs considerations, which were not previous present.
There was no support for siblings during Katie's first diagnosis and subsequent years. This situation has improved somewhat, but there is still a big gap in considering and meeting the needs of siblings who are likely to be trying to deal with loss, grief, loneliness, identity and pain, whilst parents are stretched thin in managing it all.
Katie realised how hard it had been on her siblings without this support and wished there had been something there for us. We are passionate about increasing awareness and support for these families, enabling them to find the beauty in what feels like the mess of broken pieces that are left from shattered hopes and complex lives.