Big birthdays are always a chance to take stock, and so it was for ECHO in our 40th anniversary year which ran from June 2023 to June 2024.
We have stayed true to the charity’s founding mission to “provide information, friendship and support when parents or carers of a child with a heart condition treated at the Evelina London feel alone or need guidance” .
Though the essence of our family support has remained the same over the decades, the geographical focus has expanded from Evelina London to all the 47 hospitals within the merged Guy’s and St Thomas’ Lifelong CHD Network which reaches from Norfolk to the South Coast. We criss-crossed our ‘patch’ from Hemel Hempstead, to Sevenoaks, Chatham and Eastbourne, to capture on film the stories that represent the diverse experiences of our member families, enacting the Trustees’ commitment to make ECHO’s services as representative and inclusive as possible.
Many families, from a wide range of backgrounds face experiences of separation from their local support networks in the unfamiliar surroundings of central London. So, regular visits to the wards from our Family Support and Youth Work teams provide a point of contact and continuity between families in the hospital and the wider heart community who continue to be an amazing source of peer support to one another.
In November 2023, I ignored my own advice not to take your work on holiday with you: on leave in America, I had a heart attack and surgery from a previously undiagnosed inherited heart condition. This was, perhaps, the ultimate ‘taking stock’ experience from which I now have a deeper and truly personal understanding of the challenges ECHO members face.
Time spent in hospital as a patient, instead of a helper, enabled me to live some of the experiences I have supported or campaigned about over many years, Whilst in ITU, I was handed an emergency pack, having arrived at hospital in an ambulance with nothing, which made me reflect on the thousands of ECHO Cares packs I have made, delivered and funded over the years for families in similar situations.
Throughout my recovery – which is going well – I have seen how resilient ECHO has been. Thank you all for your support, through fundraising, volunteering, getting involved, or those wonderful and kind messages of support to me; they will not be forgotten.
Finally, to confirm, as the charity moves beyond its anniversary celebrations, life begins at 40!
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