Our first child, Maisie, made her appearance on a beautiful summer’s day in June 2015.
But within less than 24 hours, just as we were about to leave the hospital, we heard the words no parent wants to hear.
‘There’s something wrong with your baby’s heart.’
We felt like we’d been kicked in the stomach. The world had suddenly been turned upside down and inside out. There’s nothing that can prepare you for the emotions you feel – shock, anger, fear, love, grief and more. ‘Why didn’t we know?’, ‘Will she make it?’, ‘what next?’, we thought.
‘Maisie only has half a heart, and if we don’t operate in the next 24 hours, she won’t make it’, the doctors said.
So, Maisie had the first of many open heart surgeries when she was just two days old, when her heart was the size of a small walnut. Our warrior fought for survival over the next six months, having a host of complications.
Six months later, Maisie defied the odds and came home, on oxygen and fed through an NG tube. But our initiation into parenthood was strange – learning how to be ‘Mum’ and ‘Dad’, but also taking a crash course in medicine.
We had excellent support from charities such as Little Hearts Matter, and found great comfort from the information shared by other charities too. But one of the most profound emotions throughout the whole experience was loneliness, and feeling that our experience was so ‘different’ to our friends who were off doing the things new parents do.
One night in particular sticks in my mind – I was tussling with Maisie’s tangled oxygen tubing and felt so desperately alone. I thought, ‘there must be some other mums near me now, going through a similar experience.’ I tried to find an app or technological solution that would help, but I struggled to find it. This is when the seeds of Friendili were sown.
Maisie is now five years old, and like many children in her situation, to look at her, you wouldn’t believe how much she’s been through. She makes us proud every single day, and like so many others like us, we try and live for today and not plan too far ahead.
Throughout our journey, I’ve spoken to hundreds of families facing health and disability challenges, from autism and ADHD, to chronic fatigue, mental health challenges and more. The common theme among the people I’ve spoken to was feeling like no-one understands – and they need all the support they can get.
So, Friendili exists as a private space to help you find other families like yours travelling similar journeys, and as a space to bring together all the fantastic information from the charities and organisations who can help you.
The Friendili app is engineered so that you can have a break from the clinical and talk about everyday things with people who ‘get it’, or, if you want to, areas where you can delve into more condition-specific aspects of your own or your child’s health journey.
Friendili is a judgement-free support space for you, and I’d love for you to come along for the Friendili journey – whether you’re a parent or carer, everyone is welcome.
I firmly believe that no family should navigate life alone – even if their journey is different. We’re stronger together, and we want you to know that we’re with you. 🧡