I am running the London Marathon on the 23rd of April in memory of my son Romeo and to raise money for Sebastian’s Action Trust.

My son Romeo was born with a heart condition called Tetralogy of Fallot, he required open heart surgery when he was 4 months old to repair this, unfortunately we would later find out after suffering multiple cardiac arrests at 11 months old that he was suffering from a much more sinister disease, Restrictive Cardiomyopathy. The only treatment for this was a heart transplant which unfortunately Romeo was not a suitable candidate for, after spending 4 months in intensive care Romeo was discharged under palliative care and we spent 5 months at home with him before he sadly passed away on the 12th October 2021 at only 2 years old. 

Romeo was a true warrior throughout his life undergoing so many surgeries, medical treatments and facing so many obstacles along the way. I am channeling the inner strength Romeo showed every single day to get me through this Marathon. 

Sebastian’s action trust is a charity that is very close to my heart, throughout my sons life and throughout my bereavement they have been there every step of the way. The support we have received from them has been incredible and we have many fond memories with our son at The Bluebells; a home away from home run by Sebastian’s Action Trust. 

During Romeo’s life our support worker was always there whenever we needed her, for an ear to listen and providing care packages when we were in hospital and at home. We have been fortunate enough to make use of their fantastic facilities at the Bluebells creating so many magical memories with Romeo during some of our many stays at the house. This gave us the opportunity to take him swimming, make use of the sensory room and the beautiful gardens. When my son was palliative they arranged for our whole extended family to have exclusive use of the house and gardens to make memories together and they even arranged a photographer to capture family photos for us, a day that we will all treasure for the rest of our lives. 

Unfortunately when a child passes away support tends to gradually fade away however that is not the case with Sebastian’s Action Trust, they continue to be there for our family still allowing us to make use of the house, allowing us to lay a stone for Romeo in their memory garden and still providing care packages and support for us and our daughters. The support from our bereavement worker is so valuable and we always know she’s just a phone call away at any time. 

As a way to give back and say thank you to Sebastian’s Action Trust for all that they have done for our family I would like to raise as much money as possible for them so that they can continue to provide their incredible support to more families like ours. Thank you all for reading and supporting my Run for Romeo and Sebastian’s Action Trust!

Jimmy 

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Sebastian's Action Trust supports families of seriously-ill children, walking alongside them from diagnosis, through treatment and beyond. We provide emotional, practical and social support to more than 600 families who have life-limited or life-threatened children. We support the whole family in the community, in the family home and at our two centres (Basingstoke and Crowthorne). We can't add days to lives, but we can - and do - add life to days.www.sebastiansactiontrust.org