On 26 April, Ebony-Rose, 21, from Barnstaple, will take on the iconic TCS London Marathon in support of Children’s Hospice South West (CHSW), who has supported her family for the past 6 years.
Ebony’s little sister, Esme, was born in 2019 with Down syndrome, transient leukaemia and a congenital heart defect.
Ebony explains how Esme has already endured so much in her short life: “At 2 months old, Esme went into complete heart failure and required oxygen 24/7 for 8 months. At 5 months old, she had open heart surgery resulting in having a permanent pacemaker fitted. When she was 18 months old, she developed childhood leukaemia and underwent intense chemotherapy for 7 months. Esme became very unwell during her chemo, even developing Sepsis and we nearly lost her multiple times.”
Esmé is now at a high risk of developing secondary cancer before the age of 15 and since her chemo, has spent years having regular visits to hospital with chest infections, RSV and other breathing difficulties as well as issues with her pacemaker, requiring emergency surgery for a new one.
Through these years, CHSW has been a constant presence for the family, with hospice days and stays at Little Bridge House giving them the chance to rest, recharge and simply be together. The hospice offers something for everyone, from peaceful reflective spaces and sensory gardens to specialist play equipment, soft play and games rooms, delicious home‑cooked meals and the support of a dedicated Care Team.
Ebony shares:
The team at Little Bridge are some of the most compassionate, kind, caring people you could ever meet. The work they do is more than just care; it’s comfort, support and magic at the darkest of times
It’s this care that inspired Ebony to run the London Marathon for CHSW, a chance to give back to the charity that has supported her family when they have needed it most:
“Words fail me to be able to say thank you for everything they have done for my family.”
Even a dislocated knee hasn’t stopped Ebony’s marathon efforts. After spending the last 2 months recovering from the injury, Ebony has been easing herself back into training, determined to make it to the start line in April.
Alongside her training, she has thrown herself into fundraising, hoping to raise as much as she can to support the “life-changing work they do every single day. Every pound donated goes towards making life a little brighter for families that need it the most.”
Ebony’s fundraising has already received a brilliant boost thanks to local band ‘Better Late Than Never’, who generously donated £700 after hosting a charity gig. Ebony’s aunt Laura is the band’s lead singer and she “can’t thank them enough.” for their support.
Reflecting on her time spent at Little Bridge House with her family, she said:
I stayed with Esme at the hospice a couple of months ago and have come for lots of day visits, I was here at Christmas which was so lovely. I’ve seen the difference the hospice makes, not just to my family but other families who come. You get to meet a lot of other families and hear their stories as well, so I know it’s not just my family that has a good impact from coming here
Those moments of calm at the hospice have been invaluable:
When I’m here I see a difference in my family, even when we are waiting to come here they are so excited and then you get to Little Bridge House and the staff are really lovely, kind and genuine. The Care Team are just magical, you could be having the worst day, and they will just make a huge effort to make you feel so much better. They do so much here that no matter what is going on outside it just gives you that mental break when you come and stay
As marathon day approaches, Ebony is running with the love of her family and the support of everyone who has cheered her on so far:
Any support is greatly appreciated, whether it is by donating, sharing or cheering me on. This run is for Esmé, my family and every single family supported by CHSW. Thank you from the bottom of my heart
Anyone wishing to support Ebony’s incredible effort and donate can do so at: https://www.justgiving.com/page/ebonywhite