Families of children with life-threatening heart conditions get vital support thanks to Contact grant

4 mins read

Friday 23 July 2021

Tags: rare conditions, pears foundation, grants, DCMS

ECHO (Evelina Children’s Heart Organisation) has been awarded a grant of £10,000 by Contact to help them continue supporting children and young people with heart conditions and their families.  

ECHO works with children and young people who receive treatment for heart conditions at Evelina London and the Royal Brompton Hospital in London, and their network of local hospitals. They’ll use the grant to continue providing emotional and practical support for families while their child is in hospital and are a crucial support network as their child grows up. This includes sending ECHO Care packs to families full of information about how they can keep in touch with the ECHO community and connect with other families.

Soaring demand for services during the pandemic

“Finding out your child has a potentially life threatening heart condition is hard for parents to hear at any time. Many families find it difficult to cope and welcome additional support, which is why we exist.

The pandemic has affected our community in many ways – while families face new challenges the impact of congenital heart disease remains. At the start of the pandemic we saw a staggering 1,600 per cent increase in demand for our services and we have been doing everything we can to be there for families who have concerns about their child’s health which now includes isolating, social distancing and delays and cancellations to operations and medical appointments. And as other hospitals stopped carrying out children’s heart surgery to make space for COVID-19 patients, our ECHO community has grown even more as families were directed to Evelina London for their child’s treatment and care.

Families depend on the services we provide more now than ever. The grant we’ve been awarded by Contact will help us continue to provide information, community and ongoing emotional and practical support to our families through this critical time.”

Samantha Johnson, ECHO’s Chief Executive.

Echo is one of 150 rare condition support groups and parent carer forums to be awarded grants by Contact over the last 6 months made possible to a match funding partnership between Pears Foundation and the Department for Digital, Culture, Media & Sport (DCMS). The grants form part of the Government’s £750m emergency Covid-19 funding charities package.

As one of Pears Foundation’s trusted, long term partners, Contact was chosen to award and distribute each grant – to individual support groups to ensure funding gets to frontline organisations and their communities.

ECHO helped from the first meeting we had with them

“When Finch was born, he wasn’t stable and needed immediate care… I got to hold my baby for a matter of seconds before he was taken away from me and taken straight to intensive care. This is where he stayed for nearly the first 3 weeks of his life. If it wasn’t for ECHO along with all our family and friends, we wouldn’t have got through this hard time and remained as strong as we did…ECHO helped me from the very first meeting we had with them.

“We attended the ECHO cardiac antenatal class, and through their online community group I met others who were expecting the same time as me. We all built such a nice relationship beforehand which gave us all such comfort and made the hospital not such a scary and lonely place, and are all still in contact today.”

ECHO member Sofia whose son Finch was born with a rare heart condition called Ebsteins Anomaly and who has since had open heart surgery.

Find out more about our rare conditions work

Find out more about Contact’s information about rare conditions. A-Z of Medical Conditions has information on hundreds on conditions, including information on symptoms and possible treatments. It also includes details for support groups, which can be an invaluable source of condition-specific information and support.

Find out more about our work in work in hospitals.