You Made It Happen
In August, Tiny Tickers was honoured to be chosen by the Duke and Duchess of Sussex as one of their 15 Forces for Change charities. Throughout September, we celebrated our very own Forces for Change on social media, shining a light on a different person or organisiation every day. These are the people who make a real impact on our work. From the intrepid fundraisers who raise thousands of pounds to help babies with serious heart conditions, to the volunteers who donate their time to helping heart babies and the health professionals who deliver our life-saving cardiac training – we honoured them all. These are the people that make a difference to babies with serious heart conditions every single day.
To celebrate the NCVO’s #YouMadeItHappen campaign, we’ve put together all the social media posts into one blog post. We hope you enjoy reading about the people who go the extra mile for tiny hearts.
1st September: Our trainersWe believe the biggest single factor in increasing detection rates of congenital heart disease (CHD) is sonographer training. Rates for heart problems being detected during pregnancy have doubled since we launched – thanks in part to our work.
Today, we celebrate the wonderful folk who carry out this training. Our trainers travel up and down the UK to deliver our specialist cardiac training to the sonographers who perform pregnancy scans. Without their hard work and dedication, our work would simply not be possible.
Pictured top row, L to R: Anne Rhodes (Tiny Tickers Head of Training), Sam Bainbridge, Nicola Harding and Marguerite Usher-Somers
Bottom row, L to R: Jo Jones, Jan Forster, Angela Hobbs and Janette Keit
2nd September: Nicky HaggertyNicky’s son, Tom, was born with congenital heart disease in 2015. Tom’s condition was picked up thanks to a pulse oximetry test, carried out just before he was about to be discharged from hospital. Nicky says she can’t bear to think what would have happened if Tom hadn’t had that test and is now a passionate supporter of our pulse oximetry campaign, Test for Tommy. She has shared Tom’s story to spread awareness, spoken at conferences about the need for mandatory pulse oximetry testing and has even filmed Tiny Tickers’ first ever vlog!
You can read Tom’s story and see Nicky’s vlog about his recent cardiology review here.
3rd September: Grace FosterGrace’s heart condition was diagnosed antenatally but sadly, despite receiving the best care available, she passed away when she was one day old in April 2012. Her mum, Aimee, first heard about Tiny Tickers two years later, when she was pregnant with her third child. Aimee volunteered for Tiny Tickers for four years, before officially joining the team as our Fundraising and Communications Officer last year.
Aimee says, ‘Grace never had a chance to make her own mark on the world and so it’s my job to do that for her. Nothing can bring her back, all I can do is turn her loss into something meaningful. Everything I do for Tiny Tickers is driven by my love for Grace and my desire to make sure all heart babies and their families get the best care and support possible.’
You can read Grace’s story here.
4th September: Natasha Pye, her partner Andy McKellar and their baby boy, Tommy.When Tommy was born, nobody was aware that he had a serious heart defect. His parents knew something wasn’t right, but despite voicing their concerns a number of times, Tommy tragically passed away when he was 11 days old. Had Tommy’s heart condition, Transposition of the Great Arteries, been detected during Natasha’s pregnancy or before he was discharged from hospital, he could have had surgery – surgery that has a 99% success rate.
Natasha and Andy have worked tirelessly to ensure no other parent faces a loss like theirs. They funded a pulse oximetry machine at their local hospital and, with their support, we launched our Test for Tommy campaign last year. Named in memory of Tommy, through the campaign we aim to place pulse oximetry machines in all UK maternity units – so every baby gets the test that could help save their life.
We’re delighted to announce that we’ve now placed 111 machines across the UK. Those machines will test 166,500 babies per year, undoubtedly saving lives. Thank you Natasha, Andy and Tommy for helping make this possible.
Find out more and donate to Test for Tommy here.
5th September: RoccoRocco appeared on TV screens across the land with Natasha (above). The appeal was presented by the wonderful Gabby Logan and was an amazing opportunity for us to inform a huge audience about our work and the need for early detection of congenital heart disease.
Rocco was born with Transposition of the Great Arteries, which was detected at mum, Lisa’s, 20-week scan. Lisa has no doubt that this early detection saved Rocco’s life.
We’d like to say a huge thank you to everyone involved. Please watch the appeal here.
6th September: Eadie Hoskisson and her family.Eadie tragically passed away from an undiagnosed heart condition when she was three months old. Her family had no idea she was poorly and were left devastated by her loss. You can read Eadie’s story here.
Eadie’s family are determined to make a difference for other heart babies in Eadie’s memory. Last year, Eadie’s aunt, Emily, bravely jumped out of a plane to raise money for Tiny Tickers. And both Emily and Eadie’s dad, Stephen, took part in the Great North Run for us.
7th September: Sarah and Theo CrawleySarah discovered that Theo had a heart condition, Transposition of the Great Arteries, at her 20 week scan. She says, ‘Whilst it was probably the hardest news I’ve ever had to hear, once I got over the shock of finding out there was a problem with our unborn baby’s heart, it was one of the best things that could have happened to us. It meant we had amazing medical care on standby to ensure a safe arrival of our baby boy.’ Read Theo’s story here.
Sarah created Hope for Little Hearts to raise money for the life-saving care needed by babies with heart conditions like Theo’s. Sarah and Hope for Little Hearts have raised over £20,000 for Tiny Tickers over the past year! We are so grateful to everyone involved in their fundraising for making such a huge difference for tiny hearts.
8th September: Joe BarryJoe was born in 1996 with Transposition of the Great Arteries, a heart condition that nobody anticipated he would have. When it became apparent he was ill, he was rushed for his first open heart surgery. Three more surgeries and twenty years later, in 2017, Joe decided to take part in the Great North Run to raise money for other babies born with congenital heart disease.
‘I decided I might as well do the Great North Run – just because I can – and to prove to everyone that just because I have a heart condition, it doesn’t stop me from running.’
Joe is a true heart hero and an inspiration to us all!
9th September: You
By leaving a gift in your will, you can make a positive change for generations to come. You’ll be helping to create more tomorrows for babies diagnosed with congenital heart disease (CHD) and their parents and families.
During Remember a Charity Week (which started on the 9th September), charities all over the country spread awareness about the importance of gifts in wills, bybusting some of the common myths about legacies.
How do you want to be remembered?
You can find out more about leaving us a gift in your will and our discounted will writing service here.
10th September: Our CEO, Jon Arnold, and his daughter, Zoe.Zoe was diagnosed with congenital heart disease (CHD) at mum Andrea’s 20- week scan. Jon says, ‘We didn’t see it coming. How could we? We were blissfully ignorant of the world of cardiac defects, open heart surgeries, oxygen saturation levels, and machines that go beep in the night. With one sentence – “I think your baby has a poorly heart” – our sonographer changed all that. The blissful bubble of our first pregnancy burst. The world of CHD swallowed us.’
Entering the world of CHD inspired Jon to join Tiny Tickers in 2013 and since then he has worked passionately to help ensure more heart babies are diagnosed as soon as medically possible and that their families are given the support they need.
As well as his day-to-day work for the charity, Jon’s dedication to the cause has, amongst other things, seen him taking on marathons, trekking up mountains and running, cycling and swimming 230 miles in 6 days. His passion and enthusiasm drives everything we do – we couldn’t make such an impact for heart babies and their families without him.
11th September: Callie Pothecary and Jemma MiltonJemma has a very personal reason for supporting tiny hearts. ‘I was inspired to start fundraising for Tiny Tickers after losing my baby son, Noel, to an undiagnosed congenital heart defect when he was 8 weeks old. I wanted to support the amazing work they do. And all that we do is in memory of Noely. In 2016, Callie and I joined forces to organise our own charity run and fun day.’
Since then, Callie and Jemma have raised THOUSANDS of pounds for babies with congenital heart disease,through their hugely successful Make the Point 10k event, but also by running in other marathons and with a quiz night they organised this summer.
They are pictured here at the celebration we held when we trained our 1000th sonographer last year. It’s thanks to Callie and Jemma, and all our amazing fundraisers, that we can achieve milestones such as that…and continue helping tiny hearts in the future.
12th September: Professor Andrew EwerProf. Andrew Ewer is a pulse oximetry expert and Professor in Neonatal Medicine at the University of Birmingham. Prof. Ewer’s support for our Test for Tommy pulse oximetry campaign has been invaluable.
Our CEO, Jon Arnold, says, ‘”Prof Ewer is the leading force behind so much of the research into pulse oximetry testing for newborns. Thanks directly to his work, dedication and passion over a number of years, more and more countries and health authorities are adopting pulse oximetry screening – meaning an increasing number of babies are having the test that could help save their lives. We have been delighted to work with Prof Ewer on our project to fund and place machines in UK NHS Trusts, and to campaign for the test to be offered to all babies.”
So far, we’ve placed 111 pulse oximetry machines throughout the UK and we’d like to thank Prof. Ewer for everything he does to help babies with serious heart conditions.
13th September: Linda AtkinsLinda has raised thousands of pounds for tiny hearts through a number of activities, all in memory of her granddaughter Ruby.
Linda says, ‘In December 2014, we were preparing to welcome twin girls into our family, when we received the news that one of the babies had congenital heart disease. Our beautiful girls, Ruby and Francesca, arrived in late March. They were both allowed home but, sadly, after 4 days, Ruby’s condition suddenly deteriorated and she died aged 11 days. I became involved with Tiny Tickers because I wanted to help ensure that every baby born with CHD is diagnosed at an antenatal scan. Ruby will never be forgotten and what greater memorial can I give to her than helping another baby in a similar position?’
14th September: FaithSeven year old Faith raises money for Tiny Tickers by selling her beautiful, hand-made key rings and other items.
Faith was inspired raise money for Tiny Tickers because she wanted to help children with poorly hearts, like her friend Oliver.
We think she’s simply amazing!
15th September: The Duke and Duchess of Sussex
The 15th September is the Duke of Sussex’s birthday. As well as wishing him a very happy birthday, we’d also like to thank him and the Duchess once again for choosing us as one their forces for change in August.
The moment we learned we had been chosen, alongside 14 other incredible organisations, we were in complete shock. And that shock quickly turned to delight when we saw what a difference the support was making.
16th September: The Garfield Weston Foundation
With the generous support of the Garfield Weston Foundation, we can continue our vital work to improve detection rates, care and treatment of congenital heart defects in babies.
Every 2 hours, a baby is born with a congenital heart defect. We work to make sure those babies are diagnosed as soon as medically possible and that their families get the support they need.
Without funders like the Garfield Weston Foundation, we simply couldn’t do what we do.
17th September: Ride2RecoverySet up 10 years ago, this cycling endurance event tackles the toughest routes in Europe. Over the years, the cyclists have raised hundreds of thousands of pounds for charity and continued their adventures again this year by tackling some of the biggest and most testing climbs in Austria, Italy, Switzerland and France.
We are so grateful to be one of the two charities supported by the Ride2Recovery event this year, which so far has raised almost £100,000!
Our Head of Fundraising, Katie Lawson, says, “We’ve been blown away by the fundraising efforts and commitment of the Ride2Recovery team. Their commitment to making a difference is wonderful, and we’re honoured to have been chosen to receive some of the funds raised. This event is a testament to strength and bravery in the face of adversity – something that we know our heart families have experienced and will understand.”
We’d like to say a huge well done and thank you to all the heroes involved in the event! You can find out more about Ride2Recovery here.
18th September: The Duggleby familyThe inspirational Duggleby family who, after losing their little girl Minnie to congenital heart disease when she was 23 days old, joined forces with Tiny Tickers in the fight for a better start for tiny hearts.
Ami and Liam’s fundraising efforts including everything from pamper evenings to the Run or Dye event and they also appeared in our Family Experience videos – talking about finding out Minnie had a heart defect after she was born and dealing with their bereavement (see our Family Experience videos here.
We are so grateful for their support, which has helped us improve the chances of other babies like Minnie and support many other families.
19th September: City of London SchoolOver the past year, the staff and pupils have worked so hard to raise a whopping £69,323.14 for Tiny Tickers. Their multitude of fundraising activities included a sponsored row, concerts, TED-style talks, collection days and of course, the headmaster’s sky dive!
We can’t thank them enough for everything they’ve done. It has been such an honour getting to know them all and seeing how much they put into their charity appeal. This donation will go a very long way in helping us train more sonographers, place pulse oximetry machines in hospitals, support families and raise awareness of congenital heart disease. This donation will undoubtedly save lives.
To all the pupils, students and parents – THANK YOU from the bottom of our hearts!
20th September: Ffion JonesThanks to Ffion’s fundraising, we were able to place two pulse oximetry machines in the Labour Ward at Ysbyty Gwynedd hospital in North Wales.
Ffion raised the funds to purchase the machines in memory of her son, Bobbi Rees, who sadly passed away at just 4 days old due to a congenital heart defect.
We’re so glad to support the wonderful work of the labour ward team at Ysbyty Gwynedd, thanks to the generosity of Ffion and in memory of Bobbi Rees
21st September: Hannah ShoomanFor her 31st birthday, Hannah Shooman set herself the challenge of running 100 km in different races (not all at once!) in order to raise money for babies with serious heart conditions.
Hannah said, ‘My key motivation for wanting to raise money for Tiny Tickers is my nephew. At his 20 week scan, a heart defect was detected and we discovered that he had Tetralogy of Fallot. I just believe that the earlier heart issues can be detected, the more chance that parents have to prepare for the arrival of these precious and incredible little people!’
We’re so grateful to Hannah and all the wonderful people who run for tiny hearts.
22nd September: SwizzelsOur 22nd Force for Change is the wonderful Swizzels Love Hearts who has supported our annual fundraising event, Heart Week, every year since it began in 2015.
We’re so grateful to them for their continued support and for helping make each Heart Week a resounding success!
Next year’s Heart Week will take place between 24th February and 1st March. 2020 is also our 20th birthday year, so it’s going to be a very special one! Make sure you save the date!
23rd September: Bob WardFor five years now, Bob has supported us to promote our work to Heart of Midlothian FC fans, and we’re very grateful for his continued support.
He has also undertaken some epic journeys for heart babies in his 64 year old MG TD car, ‘Little Red Box’, raising over £1000!
It’s thanks to people like Bob that we can continue making an impact for tiny hearts.
24th September: Honey Brown and her familyHoney was born in 2014 with undetected congenital heart disease. Despite mum, Grace, raising her concerns with health professionals that Honey was not gaining weight, slept often, felt cold and made snuffly noises when she was breathing – it wasn’t until a GP referred Honey when she was 6 weeks old that her heart defects were diagnosed. Grace says, ‘I’m pretty confident that had it not been for my intuition that something wasn’t right and the competency of the GP, the outcome for Honey could be vastly different.’
As well as sharing Honey’s story in a 4 part blog series on our website (you can read it here), Grace and the Brown family raised a lot of money for other heart babies through a number of fundraising activities, including a sponsored walk.
We’d like to thank Grace, Honey and their entire family for their support over the years – for the fundraising and also for helping spread awareness of the importance of early detection of CHD.
25th September: Billy HopkinBilly was diagnosed with Transposition of the Great Arteries (TGA) at mum, Rebecca’s, 20 week scan. TGA is a condition where the two main blood vessels leaving the heart are swapped over and affects 1 in 10,000 babies. After a traumatic 13-hour operation at just seven days old, Billy has come on leaps and bounds.
Last December, thanks to the genius of our friends at Golin, the Christmas lights of Seven Dials in Covent Garden were driven by Billy’s heartbeat.
This beautiful campaign captured the hearts of people all around the world. “Christmas is meant to be the happiest time of year but I think it’s very easy to forget that lots of families could be going through a really hard time – and sadly they don’t get to enjoy the holidays together,” said Rebecca.
We’re so thankful to heart warrior, Billy, and everyone at Golin for creating a Christmas campaign we’ll never forget.
26th September: EmmaEmma was inspired to make change after her daughter was born with congenital heart disease. She raised an amazing £3000 for Tiny Tickers which enabled us to train 13 sonographers at Royal Stoke Hospital in October 2017 and place 2 pulse oximetry machines there. Here she is (pictured left) with the sonographer who detected her baby’s heart condition at her 20 week scan.
It’s thanks to people like Emma that we can ensure more babies with congenital heart disease have their conditions detected as soon as medically possible, giving them a better chance.
27th September: Gaynor BearderGaynor has supported Tiny Tickers for many years, raising over £10,000 through various events and challenges, but most notably with the fabulous Hope For Hearts Ball in 2016.
Gaynor and husband Tony are parents to two sons, Joel and Lucas. Joel was born with undetected Critical Aortic Stenosis in July 2007 and his brother, Lucas, stole the show at the Hope For Hearts Ball with a heartfelt speech about his sibling.
28th September: Our ambassadors, Sir Antony and Lady Chanelle McCoyRecord-breaking jockey Sir Antony and businesswoman Lady Chanelle joined forces with Tiny Tickers in 2015, after their son Archie had heart surgery. That coincided with Sir Antony’s retirement as a jockey, and the couple raised funds for us and the Injured Jockeys Fund at a magnificent gala dinner that celebrated his career.
Their support transformed our charity, raising money that would help grow the organisation and train hundreds of sonographers across the UK. We are forever grateful to them for the impact they’ve had on our charity, and so many babies.
29th September: Everyone who has supported Tiny TickersToday, we celebrate all the wonderful people who contribute to our work. From the brave heart parents who share their stories in order to spread awareness, to the runners, jumpers, cyclists and those who shake collecting tins, organise quiz nights and balls and every type of event imaginable!
We celebrate the organisations who generously fund our work, the social media followers who share our content, the bloggers, the bakers, the volunteers…ALL OF YOU!!
Without you, it just wouldn’t be possible for us to carry out our vital work. Thank you for helping us give tiny hearts a better start!
30th September: Professor Helena Gardiner
Our final September force for change is Tiny Tickers’ founder – Professor Helena Gardiner, Consultant Fetal Cardiologist, Director of Fetal Cardiovascular Training and Research.
Professor Gardiner founded our charity in 1999, when she realised many of the babies she was caring for could have been helped earlier.She says, ‘As a doctor caring for unborn babies with congenital heart defects, I saw how much having a diagnosis during pregnancy improved the lives of both babies and their families, by providing support and expert care through this difficult time. This inspired me to establish Tiny Tickers to train sonographers to scan babies’ hearts in the womb more confidently.
The results speak for themselves – a recent report from the National Congenital Heart Audit (NICOR Congenital) shows that 53.5% of all CHD now have a prenatal detection across the whole UK – double the detection rate we saw when Tiny Tickers began 20 years ago.
I am particularly proud of the increase in prenatal detection of Transposition of the Great Arteries (TGA), which was regularly missed at screening. Now, an amazing 76% of TGA babies are detected before birth – thanks to greatly improved screening.
I believe Tiny Tickers is a force for change as we have been at the forefront of training and lobbying for recognition of the need for better screening – and this is also recognised in the NICOR Congenital report.’
Without Professor Gardiner, none of this would have been possible. She is a true force for change for all heart babies – past, present and future. Thank you
Read more about Forces for Change here.