Victoria and her partner are one of around 150 known families in the UK living with the constant reality that her child stops breathing when asleep unless connected to a ventilator. But unlike more visible caring roles, hers often goes unnoticed - yet it requires advanced medical training, round-the-clock vigilance, travel with meticulous planning and complete sacrifice of rest and normal family life.
“When most people go to sleep, their body knows how to breathe. My daughter's just doesn’t. That means I don’t sleep either - not really,” says Victoria.
“I’m not just her mum - I’m Tiger-Lily’s night nurse, technician, first responder. I’ve had to become all of that.”
CCHS, sometimes called “Ondine’s Curse,” is a rare genetic condition affecting the autonomic nervous system that controls functions that the body should do automatically. Children with CCHS require mechanical ventilation during sleep - for life. Yet few in the healthcare system understand the condition, and even fewer provisions exist to support parents.
“We need overnight monitoring for Tiger-Lily every night and she often becomes very poorly even with a simple cold that won't be serious for other children. We are lucky to have some wonderful carers and nurses that support us during the night-time but as she has a tracheostomy to ensure a secure connection to her ventilator she needs 2 trained people with her which is also either me or her Dad."
Victoria adds: That’s what people don’t see about CCHS. We live on high alert all the time.”
Victoria is sharing her story through the charity Keep Me Breathing, which supports families affected by CCHS and is working hard to develop an advanced breathing pacemaker, that aims to replace the ventilator to allow children like Tiger-Lily to sleep freely at night and give mum Vicky, the peace of mind and relief that she has longed for since Tiger-Lily was born.
This Carers Week, she’s urging the public and policymakers to expand their definition of caring - and to fund better support for those navigating medical-grade care at home, often unsupported and unrecognised.
A recently published international study looked at the impact of CCHS on the lives of those affected and a summary can be found on Keep Me Breathing’s website:
- 96% of caregivers worry about the future of their CCHS child/relative
- 84% report insufficient time for themselves
- 72% feel their health has suffered due to caregiving
- 87% report feeling stressed balancing caregiving with other responsibilities.
- 52% caregivers sometimes, frequently, or nearly always feel financial resources are insufficient to care for the person with CCHS.
The full report can be read here.
For more information about the charity and its work in developing an advanced medical device to replace artificial life support please check out the charity website at www.keepmebreathing.com