Here at the Bristol Hippodrome we have two members of staff whose families were greatly impacted by the amazing work of Children's Hospice South West (CHSW). Jo, whose daughter Stella passed away in 2023 and Naomi, whose son Leo, passed away in this year in 2024.

The Hippodrome have put together a small fundraising team to raise funds and spread awareness. We will be sharing with you Stella and Leo’s stories with full agreement and input from their families.

Jo will be running the London Marathon 2025 to raise money for the hospice which is obviously very close to her heart, alongside Steve another one of our colleagues.

You can read about Stella and Leo’s stories below and we will be updating with news and photos along the journey. There are great causes at the heart of both their lives so please take some time to read and hopefully donate what you can via the link.

The fundraising team will be arranging a number of fundraising events which we hope you will support. Many thanks for reading.

Stella' Story

We were gifted Stella in our lives for 14 years. Having been told she might not make double figures; we still wanted to try and give Stella the life we had imagined. Being in a wheelchair had its limitations, but it never stopped us from giving her the best life.

Stella loved bumpy paths, socialising, girly nights, days by the sea and even went skiing! Her smile was contagious and lit up every room she entered.

Stella was born full term, after a normal pregnancy. We didn’t know anything was wrong until day 3 when she had her first seizure.

After spending her first few months in intensive care, we were told she had Polymicrogyria – a brain condition so rare that she was the only person in the UK registered with it.

What that meant for her day to day was that she had epilepsy, was visually impaired, had cerebral palsy, developmental delay and ended up being fed via a tube. She needed 24-hour care, 365 days of the year.

Stella died in March of 2023 at Charlton Farm, the children’s hospice. Having been going there throughout her life for respite care and events, as a family, this time at end of life was so precious. The hospice provided all of us with quality, uninterrupted family time, discreet medical care, and the calm that we needed to escape and just enjoy her last moments without the hustle and bustle of the real world outside. It also meant that after her death we could still see her for a week afterwards until we were ready to properly say goodbye.

Charlton Farm left such an impression and we are so grateful to everyone who worked with us then and continues to, now. That is why I am running the marathon for them.

Leo's Story

Leo was born with hydrops fetalis (a condition where fluid builds up in the baby's body). This was the result of a number of medical problems, including hemolytic anemia, where the red blood cells are destroyed faster than they can be made, neonatal hyperbilirubinaemia, presenting as jaundice, and subsequently liver fibrosis.

However, despite months of countless tests and investigations, conversations with international experts, various hospitals and multiple wards, leading experts were unable to provide any answers on Leo's mysterious condition.

On the 15th April, Leo’s parents were told that he was deteriorating quickly so they made the decision to leave the hospital in Birmingham and go to Charlton Farm in Bristol so they could all be closer to home. Staff at the hospice showed understanding and compassion and did everything they possibly could to support Leo and his family during this time. After Leo passed away, his mum, dad and older brother stayed with him at the hospice, where they spent time together taking walks in the beautiful grounds, swimming and receiving emotional and practical bereavement support.

More about Children's Hospice South West

The purpose of CHSW is to make the most of short and precious lives and to put babies, children, young people and families at the centre of all that it does. They provide high quality care and medical support to those, in the South West who may not live to their 18th birthday.

They offer a home from home where children and young people with life-limiting conditions and their families can take a short break away to re-charge their batteries in a homely, warm and welcoming environment. Providing a much-needed break from the ongoing strains of caring for their children at home, juggling professional and medical appointments as well as maintaining family life and employment. In the main, they provide respite, the chance for families to get away from it all, but also offer emergency and palliative care in a peaceful and comfortable setting.