For his younger sister, Adela, this milestone birthday carries an emotional significance - not only because of what it represents for Nicholas, but because 2025 also marks 30 years since Children’s Hospice South West’s (CHSW) Little Bridge House in Devon, first opened its doors to families like theirs.
Nicholas was born in April 1995 with a rare, life-limiting condition which required continuous monitoring, intense medical attention and frequent, often urgent, hospital visits.
Growing up Nicholas, his sister Adela, and their mum and dad lived in Bristol.
Adela shares what her childhood was like growing up with a brother who had a life-limiting condition:
“I remember growing up, I would tell the other children in my class at school, that he couldn’t walk, talk, sit or stand.
"This was the simplistic, child-like way in which I would articulate my brother’s condition."
But while this was my normal, it wasn’t what most would imagine childhood to be.
As a sibling who spent a lot of time with her brother, Adela developed skills needed to help care for Nicholas from an early age. By the time she was 3, she was able to help feed him via a gastrostomy tube and by the age of 8, she could read his oxygen saturation monitor.
However, this was the life that Adela had always known.
“My brother was 3 years older than me, and for the most part I didn't think about his medical condition - he was simply my big brother with whom I enjoyed going on family holidays, picnics and watching The Simpsons at 6pm every evening. This was my normal.”
For this family, Little Bridge House in Barnstaple wasn’t just a hospice. It was their sanctuary. It offered respite, something rarely available to families at that time whose child had a life-limiting condition.
“When I was little, my family frequently visited Little Bridge House for respite care. This was care for the entire family, with a dedicated Sibling Support Team who spent time with children like me doing arts and crafts, going on day trips to local places in Devon and spending time in the infamous soft playroom.
This created an opportunity to meet other brothers and sisters in my situation, and I was able to talk freely about Nicholas without having to explain the backstory. Everyone already understood.
"Their sibling support was of immeasurable help to me.”
Adela was hands on with helping her parents care for her brother, even during the drives from their home in Bristol to the hospice in Barnstaple:
“I remember one journey to Little Bridge House being particularly stressful and I helped give Nicholas oxygen, we visited almost every service station on that stretch of the M5 that day.”
Nicholas passed away on 26 March 2010, aged 14.
The loss of a sibling is something nobody is ready for and can be particularly isolating for a child to go through.
“For me, I was still at primary school, a time where most children had not encountered the concept of death let alone that of their direct equal.”
Words cannot describe how much my family is grateful for the support of Little Bridge House.
"Not only did they provide us with respite care throughout Nicholas’ life, but also a shoulder to lean on. Which is why I wanted to take this opportunity to raise money for the hospice and in particular the Sibling Support Team who have provided me with invaluable support over the years and to help those children going through the same now and in the future.”
Adela’s Dad died in May 2016 but had raised over £20,000 for CHSW, also adding to Adela’s passion for fundraising for the charity.
To honour both Nicholas’s birthday and the 30-year milestone of Little Bridge House, the family hosted a small event in their home, accompanied by friends and family and a Sibling Support Team member who has known and supported the family for many years.
Adela has raised over £1,600 from this special event in memory of her brother - a way of remembering the sibling she so dearly loved and the charity that has, and continues to, support them all.
