CHD doesn’t go away during a pandemic, so neither do we

By Tiny Tickers CEO, Jon Arnold

There’s a famous scene in Finding Nemo where Dory calls Marlin “Mr Grumpy Gills” and asks him “when life gets you down, you know what you got to do?”. The answer, of course, is to “just keep swimming” and, ever since we first watched the movie, it’s been something of a mantra for my wife and I during tough times.

When my daughter Zoe was a tiny baby on the paediatric cardiac ward in Leeds – firstly waiting for life-saving surgery and later recovering from it – I’d carry her along the ward to look at the fish tank. Just keep swimming. Just keep moving forward and, little by little, we’ll get through this.

Well, 2020 was the year that “just keep swimming” wasn’t just an attitude – it was an operational strategy. The plans we set for Tiny Tickers ahead of the dawning of the year were ripped up by the March lockdown as COVID-19 hit the UK.

All charities suffered. Much of our work had to be stopped because of pandemic restrictions. Income plummeted as lockdown took hold. In the first week of lockdown, our income fell by around 90% compared to an average week. Suddenly, “just keep swimming” was our main focus.

We took some tough decisions. CHD wasn’t going anywhere so neither, we pledged, were we. We kept the whole staff team in place, knowing that being there for families or health professionals who reached out to us during the most difficult of circumstances was just so, so important. I couldn’t have forgiven myself if we hadn’t tried – if a family had gone unsupported when they came calling, or if a diagnosis had been missed because we had furloughed staff or cancelled work that could have continued.

Then something wonderful happened. Just when we needed it most, you – our extraordinary supporters – came together and wrapped up our little charity in a great big protective hug.

You donated. You fundraised. You cycled laps of your garden on a tricycle; you ran virtual runs; you organised online events; you set up monthly gifts; you joined our lockdown quizzes – you came up with all sorts of inventive and generous ways to ensure we were raising enough income to keep our charitable work going despite everything.

It was truly humbling, and I want to offer my heartfelt thanks to everyone who helped us keep swimming during 2020. We genuinely couldn’t have done it without you.

As we find ourselves back in lockdown, we’re still forecasting a substantial reduction in our income compared with the previous year – probably somewhere around 30% by the time our financial year ends in April. But we are getting by and, in fact, have introduced a number of new charitable projects in recent months – from family support work to sonographer training webinars.

So, what of the future? How are we shaping up?

Well, it’s been a tough start to 2021. Just as we were planning to resume face-to-face sonographer training – our core work – new restrictions hit and our plans were paused once again.

But there are great steps forward too. I’m writing this blog as one of our pilot online peer support groups for parents meets via Zoom. A new project, bringing CHD families together – providing friendship, support and resilience. A project I hope will grow into something very special in the coming months.

It’s shaping up to be our busiest year ever – continuing these new projects and, just as soon as restrictions are lifted and it’s safe to do so, getting our sonographer training fully up to speed again.

Some of that new work will include:

• New ways of training sonographers (including webinars and other online training);
• A project specifically to help sonographers communicate unexpected news;
• A new online hub packed full of cardiac resources for health professionals;
• New support packs for families at the point of diagnosis;
• Extending the emotional wellbeing section on our website;
• Expanding the online peer support groups I mentioned above;
• Continuing to provide pulse oximetry testing machines – we’re approaching nearly 200 placed in hospitals across the UK, a fantastic landmark.

We’ll need your help, of course, to keep swimming. That protective hug you placed around us in 2020 will need to stay in place so we can keep doing what we do. We’ll never take your support for granted – our aim is to keep earning your trust and loyalty by being open and honest about the challenges we face; the opportunities we have; and the way in which we spend the money you raise and donate.

I’m loathe to predict the future – both personally or professionally – during such uncertain times. No doubt there will be moments when the waves feel like they are crashing down on us; and it takes all our effort to keep our head above water. But, likewise, I’m hopeful there will be other days when we all feel that we’re swimming with the tide – when we’re making excellent progress and things seem that little bit easier.

The main thing is, whatever the coming months throw at us, and the CHD community, Tiny Tickers will be here for you. Keep safe, and just keep swimming.

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Find Jon on Twitter @jonmarnold and Instagram at @tiny.tickers.jon