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.
On a recent visit to Charlton Farm, Emily shared:
“Jess in the first picture was the nurse who came to see Daisy at home when she deteriorated suddenly and she helped make Daisy comfortable to transfer her to the hospice. When we arrived at the hospice Jess had called ahead to make sure Daisy’s favourite music was playing in her room. Jess was also there with us in Daisy’s final hours. On top of all this, Jess sorted out the unimaginable stuff like registering Daisy’s death and contacting a funeral director. I’m not sure we’d have been able to do all that on our own. The other picture is me with Jamie and Helen. They are part of the sibling support team and they made sure that the girls knew what was going on but also kept them busy and entertained so we could be with Daisy. Helen made Martha and Nora melted chocolate on toast for breakfast on the morning after Daisy died because that’s what they asked for and they now somehow remember that more than the sadness surrounding those days. Jamie has also helped set up a bereaved parents group and has brought me together with other bereaved parents who know what it’s like to lose a child. What I’m trying to say is, hospices are incredible, amazing places. I hope your child never needs to use a children’s hospice, but be glad they exist for those that sadly do.“
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.
You can support Emily by clicking here.