“It’s a great honour to be Louisa’s mum – but it’s challenging.” says mum Michaela.
Michaela’s daughter Louisa has profound autism, a genetic condition and a variety of health issues. She’s non-speaking and has a very limited understanding of language.
Michaela cares for Louisa full time and has shared her experience of parenting a child with profound autism through her involvement with East Suffolk and North Essex NHS Foundation Trust’s (ESNEFT) Research Team in a film as part of the Synapse Superstars project.
She said: “Louisa brings so much laughter and joy (and lots of cuddles) into our lives. But the daily experience of caring for a child with such severe needs is extremely challenging and exhausting.
“As a parent, I often feel so overwhelmed, confused and scared and it can also feel very heavy and hard – especially when the days are filled with tears, screaming and worry and I don’t know how to help her.”
Synapse STARS (Synapse Neurodevelopment Tracker ESNEFT) is a registry for parents and carers with children who have neurodevelopmental conditions. It offers the opportunity for families to be made aware of relevant research around neurodisability and if eligible, the option of signing up.
Michaela added: “I’ve shared our experiences because I feel the need to bring awareness to try and help her, children like her and parents of severely disabled children to know that they are not alone.
“We see research as a way of finding solutions to some of the issues Louisa has that could improve her life.”
You can watch Michaela and Louisa’s story on the ESNEFT YouTube channel.
Dr Ben Marlow is a consultant paediatrician (neurodevelopment) and clinical director at The Synapse Centre for Neurodevelopment at ESNEFT. He said: “We are very grateful for Michaela and Louisa sharing their world, which involves very real day-to-day struggles.
“We’re passionate about research studies looking into neurodevelopment for families, now and in the future, as we know through research it can help change and improve healthcare as well as the quality of life for those families.
“Synapse STARS offers families an opportunity to get involved in future research studies, so we’re really keen for others to get in touch and sign up to the registry.”
You can also find out more about Synapse STARS on YouTube.
Families with a child who has a diagnosed neurodevelopmental condition can sign up to the Synapse STARS registry.
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