A day in the life: Vicky, Mum to Tiger-Lily 3 December 2025

https://rarerevolutionmagazine.com/a-day-in-the-life-vicky-mum-to-tiger-lily/ Life as a RARE parent can be a mix of worry, uncertainty and fear, but also of great joy, meaning and love. Vicky gives us an insight into parenting Tiger-Lily—the challenges, the importance of having a care circle and most importantly, of living a life of joy My alarm goes off at 6.50am, every single morning. That’s the handover point—when the night carer finishes and my day begins with Tiger-Lily. Life with congenital central hypoventilation syndrome (CCHS) doesn’t come with a pause button. CCHS is a rare neurological condition where the body forgets to breathe automatically, especially during sleep. For Tiger-Lily, it means relying on a ventilator at night, having a tracheostomy, and always needing careful monitoring. But it also means she’s grown up with incredible resilience, and I’ve grown right alongside her. There are thought to be only about 200 children in the UK with CCHS, and around 5,000 worldwide—although we still think this is an underestimate where cases are non-diagnosed. It’s so rare that most doctors and nurses we meet haven’t come across it before. Parenting a child with CCHS makes you a nurse, an advocate, a cheerleader and a project manager all rolled into one. Mornings: waking with alarms Even when brushing my teeth, I’m listening out for the ventilator alarm. It often goes off when Tiger-Lily stirs, and even if it’s nothing serious, my heart still skips. But she’s amazing at managing things herself now—she’ll wake up, take off her oxygen probe and ventilator, and pop on her Swedish nose (a little filter for her trach). After that, mornings look much like anyone else’s: loo, teeth, clothes, breakfast. The difference is the extra checklist—spare Swedish noses, suction machine, saline, catheters, charger. It’s second nature now, but still a juggling act. The school run: book bags and beyond Getting out of the house is always an operation—school bag plus wheely box, suction machine and all the backups. At school she’s greeted by her one-to-one carer and I head to work with my phone on loud, just in case. Sometimes the phone does ring and my stomach drops. Once she fainted at school due to dehydration. For another child it would’ve been a sick day; for Tiger-Lily, it was an emergency. But those moments are rare. Most days she’s just like her classmates—running into school, seeing friends and learning new things. Afternoons and evenings After school, Tiger-Lily might go to a club—she loves dancing and recently shone in a Wizard of Oz show. Seeing her beam on stage made me so proud. On quieter days we’ll head to the park or snuggle up for reading. Evenings have their rhythm: dinner, bath (extra careful around her trach), then bed. She’s usually asleep by 8pm, with her oxygen monitor on. At 9pm her carer arrives for the night shift, and I can exhale, knowing she’s safe and watched over until morning. The circle of care We’re surrounded by people I trust—from carers to school staff. That consistency means I can let Tiger-Lily step out into the world with confidence. Trust is everything, and I’ve learnt that having the right people around us makes the biggest difference. How it’s changed me Tiger-Lily has transformed me. I used to be laid-back; now I’m determined and focused. I’ve even become a runner—something I’d never imagined and I’ve now run two 10ks. Running helps me process everything, and it shows both of us that we can keep moving forward, no matter what. Keep me breathing One huge source of hope has been Keep Me Breathing, the children’s charity based in Hove. They’re pioneering new technology for kids with CCHS, including the VENTO—a wearable CO₂ monitor that’s 90% lighter and 20 times smaller than the bulky equipment we currently use—and, in the longer term, an advanced breathing pacemaker. The thought of something portable that could alert me if her breathing dips and then automatically help her to breathe will be life-changing. It would mean less constant fear, more freedom, and even the possibility of things like swimming or travelling abroad once her tracheostomy can be reversed. Just as importantly, Keep Me Breathing brings families together. When you’re living with something so rare, connecting with people who get it is invaluable. That sense of community has carried me through. Our normal Tiger-Lily is seven now and thriving. She’s independent, clever and at that age where hugs at the school gate are so uncool. I secretly love that, because it means she’s just like any other child her age. Yes, the medical side is always there—alarms, equipment checks, planning. But our life is full of joy too: school runs, homework, bedtime stories, dance shows, days in the park. This is our normal. Busy, sometimes scary, but overflowing with pride and love. And Tiger-Lily amazes me every single day.