Tailored complex care – Paediatric
Marley’s story
Marley is a 3-year-old boy living at home with his mum Chloe, dad and two brothers. He is described by his mum as “the most special, gorgeous boy” who has a natural warmth and loving personality that draws people to him.
Marley lives with complex health needs, including Tay-Sachs disease, a progressive neurological condition that affects his ability to move, swallow and communicate. He experiences seizures, significant muscle stiffness and reduced movement, known as Hypertonia. Marley is also non-verbal and requires support with all aspects of his daily care, including airway clearance due to difficulties managing secretions. His care is supported by a specialist ketogenic diet, meaning medications must be carefully prepared and administered.
Our approach
Marley’s care journey with Pulse Nursing at Home began when additional clinical support was needed in the home. From the outset, we have worked in close partnership with Marley’s mum, Chloe, and the wider clinical team and charities to establish a tailored package of care delivered within the family home. The introduction of our specialist nurses marked a turning point, ensuring Marley could be safely supported with highly skilled, responsive clinical care, while protecting family life and daily routines.
Marley’s care is delivered by a consistent team of highly trained nurses who support with complex clinical needs including repositioning, personal care, medication administration, seizure monitoring and airway management, ensuring suctioning is provided safely when required. Night care has been a key part of the package, ensuring Marley is monitored and supported throughout the night so his parents can rest.
As Marley’s nurse, Jo explains,
“my role is to look after Marley so that his family are able to be a family. Mum is mum, dad is dad.”
Over time, the nursing team has developed a deep understanding of Marley’s needs and subtle changes in his presentation, enabling responsive, individualised care that adapts day by day.
We work closely with organisations including Haven House Children’s Hospice and Camp Simcha, along with Marley’s wider clinical team, to ensure his care is joined up and responsive to his needs. Through regular communication and collaboration, we help support access to specialist therapies, appointments, practical support and family activities, contributing to a package of care built around Marley and his family.
Impact
Safe, supported care at home
Marley is able to remain at home with his family, with the reassurance that his complex clinical needs are being safely managed by experienced nurses.
Improved rest and reduced family strain
Night-time nursing support has reduced the need for constant overnight monitoring by Chloe and her family, allowing them to rest while knowing Marley is safe and closely observed.
Specialist clinical support delivered consistently
Complex needs including seizure management, airway suctioning and medication administration are delivered safely and consistently by trained nurses.
Family life and time together
With clinical responsibilities shared, Marley’s parents can focus on being a family, spending quality time with all three of their children.
Flexible, child-centred care
Care is adapted daily to reflect Marley’s presentation, supporting both quieter days at home and active days out in the community, including visits, activities and appointments.
Marley’s experience
For Chloe, the introduction of nursing support into the home has brought both reassurance and relief after a period of intense, around-the-clock care.
“Just knowing that there’s someone caring for him and watching him made me so much more reassured, it takes that stress away from me.”
She describes the care team as a “lifeline”, explaining that without this level of support, family life would not feel sustainable in the same way. Over time, trust has grown, and the presence of nurses in the home has become a valued and integrated part of daily life.
Marley’s care is shaped around him as an individual. Even though he is non-verbal, his family and care team work closely together to interpret his needs, ensuring his comfort, dignity and quality of life remain at the centre of every decision.
Your choice, our commitment.
At Pulse Nursing at Home, we work in partnership with families to deliver clinically robust, highly personalised care at home, supporting children like Marley to live safely, comfortably and surrounded by the people who matter most.
