Help babies with serious heart conditions

by Tiny Tickers
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Help babies with serious heart conditions
Help babies with serious heart conditions
Help babies with serious heart conditions
Help babies with serious heart conditions
Help babies with serious heart conditions

Our CEO, Jon Arnold, has written about how our tiny charity has been navigating the pandemic & gives heartfelt thanks to all our supporters who help us to keep swimming during these turbulent times.

 

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 2020 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.

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, funded by the National Lottery emergency fund, 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.

Jon & Zoe
Jon & Zoe

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We'd like to say thank you. 

This year has been unexpected and hard for many, including our tiny charity. It wasn't the year we were expecting but we have done our best to continue helping babies born with serious heart conditions, their families, and the frontline NHS workers who look after them. 

Congenital heart disease doesn't stop for Coronavirus. And neither have we. 12 babies will still be born today, and every day, with serious heart defects.

As a small charity, nothing we have achieved, or will achieve is possible without our generous supporters. From the organisations who fund our projects, to the virtual marathon runners, Zoom quizzers, banana-bread bakers and Facebook fundraisers who raise vital funds – without your support we simply couldn’t continue our life-saving work.

Thank you for helping us continue our work. And we hope you have a safe and healthy festive season.

 

Jon, Katie, Aimee, Vicky, Anne & Kym

Team Tiny Tickers

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Thank you so much for your past support of those facing congenital heart disease.

Today is Giving Tuesday, and we're writing to ask if you would once again consider helping us to support a heart family.

Today, and every day, 12 babies will be born with congenital heart disease (CHD). This Giving Tuesday 12 families will face the dangerous, unrelenting and indiscriminate foe that is congenital heart disease, but now in the added context of a global pandemic.

Imagine going to your 20-week pregnancy scan and finding out your unborn baby has a serious, life-threatening heart condition. Then imagine your baby is born and needs to have surgery within the first few days of life.

Now imagine all of the above, but having to face these challenges alone because of coronavirus restrictions. You have to attend your 20-week scan alone. You receive the devastating news of your baby’s diagnosis without the physical support of your partner or a friend or family member in the room. Then, while your baby is undergoing surgery in hospital, only you can stay with them. Imagine that the nurses and other healthcare professionals can’t give you a hug or even squeeze your hand, because we’re in the midst of a global pandemic.

During the past nine months, around 2,000 women have received a suspected diagnosis of congenital heart disease (CHD) at their 20-week scan, alone. Usually, up to 10 babies have an operation to fix their heart every day. Although the number of planned surgeries has reduced during the pandemic, hundreds of babies will still have had heart surgery during the past nine months, with parents and families separated during hospital stays.

Danielle's first son, Lennox, was born with a serious heart defect, which wasn't diagnosed until he was three days old - and already critically ill. Danielle and her husband Joe watched in horror as doctors fought to save his life. Luckily, they did. Lennox had open heart surgery and is now a happy, energetic two year old.

Two years later, Danielle was overjoyed to find out she was pregnant again. However, she and Joe were absolutely devastated by the news that this baby has a serious heart condition too. She says, “We were obviously so upset and I was just truly gutted. The one thing I had been saying during this pregnancy was that I just couldn’t wait to take my healthy baby home and enjoy all the newborn moments with no anxiety.”

As if their journey hasn't been hard enough, they've had to deal with their baby's diagnosis in the middle of a global pandemic. Danielle was initially given the news at her 20 week-scan, which she had to attend alone, while Joe waited in the car park. The family face a long hospital stay when their baby is born, but with current Covid restrictions, only one parent is currently allowed at their child's bedside at a time. 

Families like Danielle and Joe's need our support more than ever. 

They need information and advice they can trust and support from a community that knows what they are going through. They need to know someone is there for them during their darkest hours. 

Tiny Tickers does all those things and more. 

We can make sure parents know they’re not alone - that we and the heart community are always here for them. That’s why we’ve created hug buttons to give parents a virtual hug when they need it. They can take this button with them into hospital and to appointments to remind them that they’re not alone. It can be given to siblings, placed under pillows, or kept in pockets. 

A £10 donation, will provide one family with a virtual hug. Your donation will enable us to send one of our family support packs to a heart family, along with a hug button. And when you make your donation, you can also leave a message of support for that family.

Please help us to continue being there for them.

This Giving Tuesday, your £10 donation will help us send a support pack to a family who has just received the life-changing news that their baby has a serious heart condition. This package includes all the information they need about what they face, access to our supportive communities of heart parents and a hug button - so they can receive a virtual hug whenever they need it.

Nothing beats the power of a hug. Please help us send a virtual hug to a heart family today.

 

With warmest wishes,
Team Tiny Tickers

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Tiny Tickers is now on a slightly different path to the one we were expecting as 2020 – our 20th anniversary year – rang in. Although the UK is currently facing a huge public health emergency, a baby is born with a serious heart condition every 2 hours. That fact remains. We are here to help but only with your support. 

From 8 February to 14 February 2021 we'd love if you would join us in celebrating heart heroes everywhere by fundraising and raising awareness as part of Heart Week 2021

Though we don't know what the world will look like in February, we know that it's never been more important to help babies affected by congenital heart disease. 

Click here to sign up for a free Heart Week toolkit

How can you get involved? 

From tea parties to dress down days, baby cinema and yoga classes, to sponsored silences and office activities, we’ve had it all. Even walking across the Forth Bridge on the coldest day of the year and taking a leap of faith with a Heart Week skydive!

Whether you raise a little or a lot, Heart Week is the chance for you to use your imagination and come together with friends, family, colleagues and the community to show your support for Heart Heroes everywhere. Dress down days may be so last year, but there are lots of virtual tips on our website here.

When you sign up to take part you'll receive a free Heart Week toolkit full to the brim with ideas, advice and resources to help you have fun whilst fundraising! 

Covid safety

We don’t know what the world will be like in February so some of your ideas might have to look a little different from previous years. Above all else please follow government guidelines when making your plan.

Thank you for helping us ensure that every baby born with a heart defect has a fighting chance

 

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Yesterday, on the 8th November, we celebrated our 21st birthday!
On the 8th November 1999, Professor Helena Gardiner founded Tiny Tickers when she realised many of the babies she was caring for could have been helped earlier. 
Tiny Tickers is now on a slightly different path to the one we were expecting as 2020 – our 20th anniversary year – rang in. Although the UK is currently facing a huge public health emergency, a baby is still born with a serious heart condition every 2 hours. That fact remains. We are here to help.
Please support us and help us celebrate 21 years of helping tiny hearts. Any donation, no matter how small, will make a big difference and help us continue our vital work. Heart babies and their families have never needed us more than they do now. 
Our future remains unclear. We are on a different path to the one we were expecting in 2020 - but our intended destination remains the same - a better place for babies with poorly hearts.
We've achieved so much in 21 years. And it's all thanks to you, our incredible supporters!  Thank you from the bottom of our hearts


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Organization Information

Tiny Tickers

Location: London - United Kingdom
Website:
Facebook: Facebook Page
Twitter: @tinytickers
Project Leader:
Jon Arnold
London, London United Kingdom
$21,290 raised of $25,000 goal
 
384 donations
$3,710 to go
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