I have an incredibly unique family as both my brother and sister have a degenerative disease of the nervous system. My Mum is in the last stages of Multiple Sclerosis (MS). So from the get-go I was in a world of disability, experiencing the good, the bad and the down right ugly!!! The advice I … Continued
Shamini entered Poetry for Good, a national competition that ran in the Spring of 2021. Her piece ‘Risk Assessment: High’ was highly commended in the spoken word category. Many siblings will relate to this powerful and articulate poem, that highlights the unseen work of sibling carers during the pandemic. “I entered this competition because I … Continued
My sister, Mary Kaye, was born with cerebral palsy (CP). She has had a number of other health complications throughout her life which can go a long with CP. I am 70 years old and Mary is 5 years younger than I. Two brothers fill out our family of 4 children. In our family there … Continued
The day my sister was born, I had no idea this tiny baby would become the most important person in the world to me. Nearly four decades later, we are soul mates. As children, we could be silly together but we were too different to enjoy the same things. That all changed when I took … Continued
Living through the pandemic coronacoaster has been even more challenging for those of us who have been shielding to protect clinically vulnerable siblings. My brother Dan has Profound and Multiple Learning Disabilities due to a rare genetic condition called ATRX. Our younger brother Sam who had the same condition passed away suddenly from sepsis … Continued
This pic was taken in autumn 2020 when my sister Carol had just had a hip replacement at Hinchingbrooke hospital in Cambridgeshire. It’s not the most glamorous pic but then, it’s not always glamorous being a sibling is it?! Carol has Apert Syndrome which for her means she has some physical and some mild learning … Continued
During covid my whole life changed. I work for the NHS on a critical care unit and am a single parent to a little boy. My dad and mum usually help out with adhoc care. My brother Mark has learning disabilities, and in December 2019 he had to move in with my dad as an … Continued
Where am I? Almost 2 years on – that is a good question and it feels like it is very difficult to answer. I really want to write this update and tell a story of everything being great – that I am back to doing the things I love. The reality is that I feel … Continued
Over the summer of 2021, many Covid-19 restrictions were lifted across the UK and many people returned to pre-covid activities. For some siblings, this wasn’t possible. Some continue to shield or take daily life extremely cautiously, in order to protect their clinically vulnerable brother or sister. Our shielding survey in August 2021 revealed the extent … Continued
I struggle to think about the last 6 months of life as a sibling in Covid times, such a kaleidoscope of thoughts, feelings and experiences. Some days I feel like time is flying by, other days are long and difficult and loneliness really hits hard. The loneliness of the last 6 months has been really … Continued