In April, Emily Marsden will run the London Marathon for Children’s Hospice South West (CHSW), carrying the memory of her daughter, Daisy, with her every step of the way.
Emily never imagined she would be a marathon runner. When she lived in London, she loved watching the race each year, but never thought it would be something she would do herself.
Emily’s daughter, Daisy, died in April 2024 at the age of 9. Daisy lived with Rett Syndrome, a rare neurological condition that caused severe disabilities, including loss of speech and hand control, recurrent chest infections and difficult to treat epilepsy. Despite her declining health and repeated infections, Daisy was known for her peaceful, loving nature and deep joy in music.
Introduced to palliative care at the age of 7, Daisy continued to fight and share precious years at home. After an unexpected deterioration, she was transferred to Charlton Farm, one of CHSW’s local hospices, where she died peacefully, surrounded by love and compassionate care.
“Daisy died at Charlton Farm in 2024,” Emily says.
“The care Daisy and our family received when she died, and following her death, was exceptional and made the pain of losing her that little bit more bearable.
"I am a firm believer that everyone should have access to good quality end of life care when that time comes. CHSW are a shining example of how to provide the highest level of care at the most difficult of times.”
Following Daisy’s death, Emily faced an overwhelming sense of loss and emptiness after years devoted to Daisy’s care.
“Parents who have spent a big chunk of their lives looking after their disabled or poorly child have a huge gap in their lives when their child dies and that caring role is suddenly taken from them,” Emily says.
I think a challenge like the marathon is one way of keeping busy and filling that gap.
Meeting another bereaved mum through Charlton Farm, who ran the London Marathon in memory of her own daughter, planted a seed. Emily realised that a challenge like the marathon could offer focus, purpose and a way to move forward while still honouring Daisy.
Training now fits around a busy life. Emily is juggling a new job, 2 young children and grief that still comes in waves. She runs 3-4 times a week, cycles to work daily and faces many cold, wet, dark mornings when motivation is hard to find. On those days, she reminds herself why she is doing this.
“I have to remind myself why I’m doing it,” Emily says. “It’s a personal challenge for me, but I also feel that losing a child changes your perspective in a way that’s hard to explain. Life is short and unpredictable, so I’m trying my best to take positive opportunities that come my way.
Emily’s race day goal is simple: to reach the finish line. Time does not matter. Daisy will be on her mind throughout the 26.2 miles.
Running for CHSW was an easy decision for Emily.
I am eternally grateful to CHSW for how wonderfully they cared for Daisy and our family.
As race day approaches, Emily knows crossing the finish line will be emotional.
“I think it will feel pretty emotional as Daisy is at the heart of why I am running,” she says. “I will also be so proud of myself as I am not a natural runner and I’m also not great at sticking at things. This will be a real achievement.”
Children’s hospices like Charlton Farm are special places and I am incredibly proud to be running for them.
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