BraveHearts

Plus Meet some of our fundraising superstars P4-5 Get involved P12

Issue 12, Autumn 2015Registered charity 1148359

Dr GeorgeWe pay tribute to the much loved and missed Dr George Ballard P10-11

AmelieThe incredible story of little Amelie P8-9

Farewell

Amazing

Inside this issue...Willow, who had surgery in May and is now awaiting a further operation

Ethan Dunks, 8 months, had ops

at 10 days and also 7 months old

éabha, 3, has hypoplastic left heart syndrome and has had her Fontan op

Preston Walgate pictured here just three days after surgery

Thomas Kielty had surgery at 10

days old – and is now aged 2

2 3

CHSF01 £5to donate now, text

Katie’s Club

4-5 We salute the fundraisers who help us do our work

6-7 Kitchens to conferences – how your money is spent

8-9 Meet brave little Amelie, and read her amazing story

10-11 Staff and patient tributes to Dr George Ballard

12 Inspired? Here’s how you can get involved and help

Welcome

All of us at Children’s Heart Surgery Fund were devastated by the tragic news that Dr George Ballard had passed away following a cycling accident this summer. George was an incredible doctor and a truly lovely man, and we have been overwhelmed by the messages of condolence that flooded into our office. As well as helping heal the hearts of so many patients, he clearly touched the hearts of many of you. He will be missed.

In this issue, we’ve printed just a handful of those beautiful messages, and George’s friend, Dr James Oliver, has kindly let us publish some of the wonderful speech he gave during George’s funeral – you can read these on pages 10 and 11.

It’s an utter tragedy that the world of cardiology has lost such a great mind and talented doctor but, of course, first and foremost our thoughts and love go to George’s family, friends and colleagues at such a difficult time. I hope they

By Sharon CoyleChief Executive Officer

HullLeedsBradford

Wakefield

Calderdale

Kirklees

East Riding of YorkshireYork

Selby

Scarborough

Harrogate

Sheffield

Richmondshire

Craven

Hambleton

Ryedale

Barnsley Doncaster

Rotherham

NELincs

North Lincolnshire

Supporting our region – this map shows the area covered by Children’s Heart Surgery Fund

Here are just a few of the heart heroes who have been treated at the Leeds Congenital Hearts unit recently.

They include little Willow, whose photo was sent in by her mum and dad, Donna and Danny. Willow had open heart surgery in May, and the photo was taken seven weeks after her operation.

All the children who have surgery at the unit receive a Katie Bear, medal and certificate. If you’ve got a photo you’d like us to consider for a future issue, send it to bravehearts@chsf.org.uk – thank you!

Our very special cover this issue features four generations of heart patients. From left, Renee-May Clarkson, Rachel Smith, Amy Hawksworth and Ebony Fisher. All four have been treated at the Leeds Congenital Hearts unit over the years.

Cover stars

Welcome to your new issue of BraveHearts – as always packed full of the fabulous efforts of our supporters and fundraisers, and examples of the vital projects we’re able to fund because of your continued help.

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www.chsf.org.ukvisit our website

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It’s that time of year again – firms around the region are starting to plan for 2016 and choose their charity of the year partnerships. Corporate support is really important to us and we’re keen to find new companies to partner with. Could your firm help? Do they have a charity of the year? If so, let us know and help us plan for another great year of fundraising in 2016.

Amazing supportersThe last few weeks have, yet again, shown the incredible community our supporters have forged. From the outpouring of love and affection following George’s tragic passing; to the inspirational efforts of our many fundraisers; to the strength of support and advice from our online community on Facebook; to, of course, the amazing children I see on the wards – time after time I have been reminded what a phenomenal community we have. Thank you all for your continued support.

Could your firm help?Turning back to the work of the charity, we are currently recruiting new members of our team as we continue to do more than ever to help patients and support the unit.

We’ve bid farewell to Debbie, who leaves with our thanks and best wishes, and will be bringing in new roles including a corporate fundraiser; a marketing and communications person; and an additional admin and finance assistant. These roles will increase our income, meaning we can help the unit reach the lastest standards required by the NHS.

In July, the NHS England board met to decide the outcome of the national review into congenital heart services. Many of the arguments we’ve been making since the flawed Safe and Sustainable review started so many years ago have now been accepted. A new set of standards

Looking to the future

take comfort from the knowledge that he did so much good and helped so many heart patients during his all-too brief time. That so many children and adults are here today partly because of his expert care, is a wonderful legacy. RIP George.

for heart services have been agreed, which each of the current surgical units will need to work towards. We’re lucky here in Yorkshire, the Humber and North Lincolnshire – we have a superb unit and this is a great opportunity to build a world-leading centre. More than ever, our charity will need to support the unit, and we are expanding our team’s capacity so we can have an even greater impact and fund even more projects and resources.

Warm welcome for new partner IcelollyWe are delighted to welcome Icelolly as a new corporate partner after the Leeds-based firm chose us as their charity of the year. The holiday price comparison company kicked off their year of fundraising with an office games day which included buns and cocktails and raised £214.

Triple summit bid for Dave

Natalie Day and family raised £1,015 with a coffee morning

Sophie Gittus and mum Kathryn hand over the £800 they raised at various events in Rainton

As well as running the Leeds 10k, Andy Marsden – along with wife Caroline – took on lots of fundraising activities and raised £5,705

£289.21 was raised at the Slaithwaite Co-operative fundraiser thanks to Barbara Bamforth, pictured holding her grandson Harvey

Scott Riley raised £512 with his Liverpool Marathon efforts

4 5

“My first route was the toughest – it’s used in the Tour de France. Knowing the legends that have ridden Mont Ventoux helped me – imagining the atmosphere during the Tour got me through some tough parts. The last 6km changes from a scenic green forest to a cold, bleak mountain side. Then it was 23km of fast downhill hitting speeds of up to 90km/h – but having come down I had to turn around and climb the same route. Those long straight climbs were a killer. After my second descent I turned around and straight away faced a head wind. This route was longer in distance but not as aggressive on the climb. The bleak last 6km was the toughest part of the day. Eventually I reached the summit for the third and final time. The challenge was hard – physically and mentally – but I enjoyed every inch of Mont Ventoux. At times my legs were saying stop but knowing I was doing this for my sister Susan (who we lost to heart problems 34 years ago) kept me going. At those low moments it felt like she was giving me a little push. People made the effort to donate so I wasn’t about to give up when it was hard!”

thank you!To all our fundraisers...Hertel raised £3,716 with an Apprentice-style team-building challenge during their annual conference

Inspired? See back page

for our latest fab events

The Lloyd family took on a sponsored walk – their fundraising total now stands at £2,211

St John Fisher School raised £1,284.18 finishing 19th out of 90 in the 50th anniversary Knaresborough Bed race

Our London Marathon runner Adam Cockroft (and son Kyle) ended up raising £4,223

£289

£2211

£3716

£536

The Hirst family raised £835 by taking part in our Superhero Walk

£1284

Sally, Francesca and Darren raised £2,141 taking on Tough Mudder

£1015

£800

£5705

£4223

Christian and Freya Carroll raised £536.10 at the christening of their sons Kody and Albie. Albie is a heart patient at the Leeds unit

£2141

£835

Want to join our team? Keep an eye out for

great fundraising events at www.chsf.org.uk

£512

£214

£1532

Dave Ives raised £1,532 for us by completing one of cycling’s most famous challenges, Mont Ventoux, a staggering three times in a single day! Here he describes what it was like to climb 14,425ft in one day and ride the same route as Tour de France legends...

Fancy a cycling challenge?

London to Paris event details on p12!

£407

Maureen Quinn’s family fun day included a football match with cast and crew from Emmerdale, raising £407

Lydia inspires new ID cards to help patients

6 7

Lydia said: “I’m a heart patient and have had four open heart operations. Whenever I’ve been into a hospital for an appointment or something that wasn’t related to my heart condition, the doctor there would always ask me about my condition and I would have to explain it to them.

“What finally made me get so frustrated with having to repeat and explain myself over and over again was when I had my horse riding accident last year. So after my experience in the hospital I came up with the patient card idea. It’s very simple – it’s the same idea as people have with epilepsy or diabetes; they both have wristbands or dog tags with information about what they have.”

“For example someone with a heart condition may have a fall. Their card will help paramedics decide how to treat the patient because they might need to go to a hospital which specialises in their condition, or the paramedics will know which medicines they can use and which ones they can’t.

“It feels amazing seeing the cards in use. It feels so great knowing that they are out there.”

Mike Fresson, from the cardiac nurse specialist team, said: “With the driving force of Lydia, and the support of the Children’s Heart Surgery Fund we have produced these personalised information cards. These write-on cards are the size of a credit card and can be carried by our young people. Name, heart condition, emergency contact number and additional information can be put on to the card, and then sealed over. They are also great if young people are at school and need to make staff aware of their heart condition.”

Cards can be requested from your specialist nurses in clinic or by emailing ccns.lgi@nhs.net with your address.

Trustee Andy has a muddy good time...One of our trustees, Andy Chilton, turned fundraiser during the summer by taking on the Mudificent 7 challenge race in Warwickshire. Together, Andy and his friend Mark Hippey raised £742.50. Andy said: “The race was ace! The first obstacle was a crawl through rotting meat, then several high walls, a 40ft rope climb, sheer drop slide and many, many vile mud pits. It ended with a lake swim which left us exhilarated.”

We were delighted to welcome Jon and Karen Collinge to the Leeds Congenital Hearts unit.

Jon’s aunt, Doreen Greenwood (pictured right), left us an incredibly million-pound legacy in 2010, much of which has been spent on specialist equipment on the wards. A plaque – expressing our gratitude to Mrs Greenwood for creating a legacy that will help future generations – is on display on the unit.

Jon said: “The loss of our aunt was a very sad time for us all but, now, having seen the difference that her donation has made to help all the people at CHSF carry out their brilliant work has given us a real sense of pride in her wish to help the children who visit the ward. We now feel a strong connection with everyone involved which will last forever.”

Doreen’s legacy will last for generations

Approved...Home-testing machinesWe’ve funded another 20 INR coagucheck machines to support patients on warfarin by letting them home test rather than visit hospital or clinic – £5,980

Staff trainingWe’ve paid for lots of staff training recently, including:● A cardiac nurse specialist to attend a fetal cardiology network study day;● A specialist physiotherapist in congenital cardiology to attend the Just Good Medicine conference;● A paediatric cardiac / PICU physio to attend a Paediatric Intensive Care Society conference.All funded – £602

Parent facilitiesWe funded blinds to replace curtains in the quiet room on Ward L51 – £276

HeadphonesLast issue we told you about funding new TVs with built-in DVD players for the ward – now we’ve purchased sets of headphones to go with them – £80

Information boardsWe’ve purchased four display boards for Ward L51 to show important information for parents of infants and young people, such as feeding, safe sleep and general cardiac information for both pre and post-op patients – £551

Reward stickersWe’ve funded stickers for young inpatients – £148

Our famous fishes!We’ve paid for the annual renewal of the fish tank on Ward 51 – £576

Here are just some of the other grants we’ve been able to approve recently thanks to your generous support...

Andy successfully completed the 7km obstacle race

Thanks to the generosity of Howdens Joinery, the family accommodation in Brotherton Wing has this fabulous new kitchen. The Howdens team was inspired by heart patient Adam Worker, aged one, whose dad Mark used to work for the firm.

As these before and after photos show, the new kitchen is a massive improvement and will benefit all families staying in the rooms.

Howdens donated the kitchen, with the cost of fitting shared with fellow charity Take Heart.

Before

After

Staff and patients showing off the new ID cards, which are available from the specialist nurses team

Adult heart patient Lydia Overend has inspired a project to produce ID cards that will help patients explain their condition to other health professionals. We’re delighted to have funded the cards and spoke to Lydia about them...

£743

Wear Red celebrationSarah Hardy and family raised £779 at a Wear Red party to celebrate the anniversary of daughter Charlotte’s surgery

£779

Mum Helen with Amelie after her surgery

8 9

‘We said goodbye to our beautiful little girl and left her in the hands of the surgeon’

Mum Helen: “We found out that Amelie had a heart murmur at her routine eight-week check and we were referred to paediatrics. We began to notice that she would look a dusky blue colour on crying and her weight gain was poor – so we were referred to the cardiologists at Leeds when Amelie was 13 weeks old. She was diagnosed with tetralogy of Fallot.

Sam and I are both doctors and this was a condition we remember learning about at medical school. We couldn’t believe our daughter could have such a serious condition.

We were absolutely devastated and knew we had some testing times ahead. Amelie started medications to try to stop her having these blue spells and we were told the aim would be to perform open heart surgery when she was around six months old – allowing her some growing time.

Unfortunately Amelie continued to have blue spells and the following week we went to the cardiac ward. That day she became critically unwell – we were told she would require an emergency operation to save her life.

Little Amelie Dabin was born with tetralogy of Fallot and had emergency surgery aged three months. Amelie’s mum Helen and dad Sam tell us her inspiring story...

Fortunately the team felt she was just big enough to have a full repair and this is what they would aim to do.

So, at 11pm that night, she went into theatre and we said a very emotional goodbye to our beautiful little girl and left her in the hands of the expert surgeons and anaesthetists.

It was the longest five hours of our lives but she came out of surgery having had a full repair and looking pink instead of an awful blue colour.

We had a few set backs post-operatively but we were all able to go home ten days after this major surgery – just in time for a family Christmas at home.

She went from strength to strength and rapidly gained the weight she’d lost before her operation. She would wake us up every few hours overnight for a feed, but we really didn’t care – we had our beautiful little girl back home and she was thriving.

The first post-operative follow up appointment was a real worry but we were told how well the operation had gone and she is now being seen once a year. We have been told she will require life-long monitoring and will require an operation to repair her pulmonary valve at some point in the future. We were devastated when we first found out about her condition,

but were quite unaware of the roller coaster of events we were about to embark upon. The staff at the unit were so supportive during our stays in hospital and in particular made sure we were always kept informed and up to date with Amelie’s progress.

It really was the most difficult week of our lives during and after the operation, but Amelie has just done so well that on a day-to-day basis we are able to forget about her heart condition. Each year when she has to attend her follow up appointment we are reminded again and this can be difficult, but we will continue to see all the positives and see that Amelie is growing into a beautiful, healthy and strong little girl who will not be defined by her heart condition.”

Dad Sam: “As parents of a baby with congenital heart disease, there is a roller coaster of emotions.

We naturally wondered ‘why us?’ and why had our precious little daughter been dealt such a hand. We took everyday as it came and stuck together. It never ceased to amaze us how resilient children and babies are. They only know how to fight, and we witnessed this day-in, day-out.

Along with the help of the nurses, health care assistants, doctors & surgeons, we were able to focus on

getting Amelie better. Each day we were able to draw on something positive. Seeing our little daughter win her battle made us incredibly proud. We knew that Amelie was in the safest possible hands and that is all you can really hope for as a parent. Thanks to all the cardiology staff at the LGI, we are blessed to have such a cheeky and bossy little toddler who makes us smile everyday!”

Mum Helen: “Amelie has proven she is a real fighter. She overcame major open heart surgery at such a young age and has continued to prove she is a determined little girl. She loves nothing better than being outdoors and active. In particular she loves helping in the garden, going to the park, riding her bike and being a

info@chsf.org.ukget in touch

0113 392 5742

little adventurer. She has a habit of climbing and hanging off things she probably shouldn’t be, including gates, tables and fences!

We are always so proud to see that her heart condition doesn’t limit her and I’m sure her determination and bravery will get her through any operations she may need in the future. She truly is our very special little girl and will make an incredible older sister to our new baby Freddie who was born in September.”

Amelie is growing into a beautiful, healthy and strong little girl who will not be defined by her heart condition

“”

Brave Amelie inspires epic bike eventsSam, Helen and their family and friends have raised more than £14,000 for us since Amelie’s open heart surgery.

Sam told us: “Ten of my good friends got together and cycled 112 miles across the Dales. We managed to raise over £11,000, which was a great experience for all involved. It was nice to feel like we were giving something back to everyone who had supported us on the way with Amelie.

“More recently, my bonkers brother Tom Dabin and close friend Luke Birtwistle raised over £3,000 cycling 226 miles in one day across Wales. We will all continue to fly the CHSF flag in the hope we can help other babies like Amelie!”

It never ceased to amaze us how resilient babies are. They only know how to fight – and we witnessed this day-in, day-out“ ”

Amelie was taken down for emergency surgery at 11pm – the operation lasted five hours

Amelie was born with tetralogy of Fallot

Amelie has just celebrated her second birthday, and is about to become a big sister

‘George was warm, welcoming, and caring... with a remarkable intellect and a common touch’

He was the best there ever was, is and ever will be. He was a fantastic man who always made time for everyone who needed him, and always had a smile.

10 11

“Reading through everyone’s thoughts and incorporating them into what I am going to say to you now has of course been emotional but at the same time it has also been therapeutic. One minute overwhelmed with sadness the next overwhelmed with how much respect I had for him as a doctor or smiling broadly at a memory of something ridiculous that only George could have said or done.

So what about George the doctor? I’m sure that everybody here knows that George was a cardiologist who specialised in Adult Congenital Heart Disease. Some of you may not know that his particular area of expertise was in imaging. That means scanning the heart and is of fundamental importance in our specialty. George ran our MRI scanning service and was our main expert in echo scans. As an imager he was, quite simply, brilliant. He had pure natural talent. His understanding of the 3-dimensional structure of the heart was unparalleled.

Through the scans that he reported, commented on and advised on he played a central role in the management of literally thousands of patients, both adults and children.

But George was much more than an imaging machine. He was a great doctor in every respect. His ability to think about clinical problems was superb. He had oodles of common sense and could think out of the box. He was very

Tributes to Dr George BallardThe Leeds Congenital Heart unit lost one of its most-loved and respected cardiologists in August, when Dr George Ballard died after a cycling accident in the Yorkshire Dales.

George was incredibly popular with colleagues and patients, and we were flooded with messages following the news of his tragic loss.

George, age 41, was a married father-of-two. He qualified as a doctor in 1998 from Manchester University after gaining a degree in medical science in 1995 at St

Andrew’s University. He settled at the Leeds heart unit in 2010, after spells at various hospitals, including the Evelina in London.

The thoughts and sympathies of all of us at Children’s Heart Surgery Fund are with George’s family, friends and colleagues. George will be missed by us all.

We have decided to replace our usual staff interview with extracts from the speech given by Dr James Oliver at George’s funeral, and a small selection of the many tributes we’ve received from patients and their families.

“”

much someone to turn to for a sensible opinion. Congenital heart disease can be very complicated but George could grasp the essential issues with lightning speed.

He worked hard. He worked really hard. The NHS very much got its money’s worth out of George. Late nights were far from occasional, they were pretty much the norm. Mainly beavering away reporting MRI scans. What drove him to work so hard? A desire to further his own career, develop a reputation nationally or even internationally? Not at all – those sorts of things genuinely were of no importance to him. To bolster his personal income? Absolutely not. I think it is fair to say that he despised private medicine and sometimes almost seemed embarrassed

even to accept his salary. I think he was largely driven by a fairly simple but profound sense of duty, that he should do his best for both patients and for his colleagues.

What about his patients? What did they think of him? The messages we have received and those posted on social media say it all. He was warm, welcoming and genuinely cared. He may have had a remarkable intellect but he also had a common touch. Of course, it is George’s personality, his character, that he will be remembered for most. I think it is fair to say that George had presence, and he had it in abundance. When he was about the chances of smiling, or frankly laughing out loud, were high. Meetings that might otherwise be rather dry were brought

George was renowned for his imaging skills, hard work and eagerness to support his colleagues

alive. He commanded an audience and people listened to him.

His humour was wacky and childish – for example locking a colleague in their office and running off with the keys. Jokes were plentiful and his last booming belly laugh is probably still faintly reverberating around the corridors of the hospital.

So many people have commented on his singing. Boy, could George sing. Actually, I’m not sure he could sing, but he certainly did sing. He sang a lot. There was no focus on any particular musical genre. Good King Wenceslas and other carols in July, Copacabana, Is It Me You’re looking for? I’ll never forget a rendition of Let It Go from the movie Frozen in our meeting room – ear-

damagingly loud and almost operatic in its delivery.

George had quite a number of characteristic catchphrases that were very familiar to us. ‘Does that make sense?’ was very frequent. ‘Miss you already.’ ‘Too much?’ It usually was.

Now how many people here regularly cuddle their colleagues at work? Certainly, in my working life I haven’t come across anyone other than George. He offered them liberally, with no particular prejudice. A kiss from George was also not all that infrequent. As I speak to you now I think I can physically feel his stubble. At the time I must confess to not being the most willing recipient of those kisses but now I know that there won’t be any more I almost...

almost regret not kissing him back. The support he offered to us, his colleagues, was wonderful. He could be relied on absolutely. He always found room for an extra MRI, ten minutes with a colleague to review a scan, or an extra visit to the ward to see a patient, no matter how many other things he had on.

Right now it seems impossible to believe that never again will we benefit from that awesome brain or his everlasting support. We won’t be told that we are his ‘number one’ or be subjected to a cuddle or a stubbly kiss. No more will we hear the singing, the expletives or the booming laughter.

This time George, it really doesn’t make sense, but the memories you leave us with are priceless.”

Dr James Oliver, friend and colleague, speaking at George’s funeral...

“He was a fantastic consultant. The chatty, funny, knowledgeable man will definitely be missed. Taken far too early – fly high and shine bright”Lollie

“He was a great man who had a great sense of humour and cheered up everyone who saw him. He was such a genuinely nice guy and a fantastic cardiologist to me and many more. You will be missed by many”Joe

“He was such a knowledgable, approachable guy who had such a lovely patient manner.”Jo

“He was my cardiologist and he was such a fantastic doctor. Condolences to his family at this sad time.. They should be very proud of him and what he achieved.”Fiona

“I have been under the care of Dr Ballard for five years. I spoke to him less than two weeks ago after my heart valve replacement surgery at LGI. He was a fantastic cardiologist who always managed to settle any nerves or worries I had with his exceptionally caring and funny personality. He will be greatly missed. RIP George – a hero in my eyes.”Ryan

“Dr Ballard looked after me when I was seriously ill during the birth of my daughter, when I spent time in coronary care. I will never forget how well he looked after me. A true gent”Kimberley

“George was a genuinely nice man who put you at ease as soon as you walked through the door. Not only did he make me look forward (as much as you can) to my clinic appointments, he also made sure I understood everything he was telling me by drawing really bad (his words) pictures. The unit has lost a truly amazing man and hospital visits won’t be the same.”Rachel

“A genuine, understanding doctor. Listening, answering questions and, most of all, making me positive about the future.”Katie

“Words can’t describe how sad we are all feeling. He was an amazing doctor – funny, witty, understandable. He will be sadly missed by all us heart patients and their families. Who is gonna pick on me now at my appointments?”Andrea

“He was an amazing man who will be fondly remembered and sadly missed by all who knew him. He has had to tell me some terrible news in the past but he still had the ability to make me both laugh and cry at the same time, it was a pleasure to see him in clinic and i will be forever in his debt.Gemma

Joanne

“RIP – and thank you for taking such good care of our son”Karen

An incredible man – without him I don’t think I’d have been brave enough to have my surgery. He made an incredible difference to everyone who knew him

“”Kim

Without you on hand to answer my panicked phone calls, cheer me up when I felt at my lowest, and to fix me in the only way you knew how, I wouldn’t be here today

“”Rebecca

“You were the greatest. Big thanks for saving my life. I’ll miss your bad jokes.”Vicky

“I’ll never forget him yodelling in the corridor”Kim

We have launched a memorial fund for George. If you would like to contribute, please get in contact with us via info@chsf.org.uk or 0113 392 5742. All money raised will be spent on the adult cardiology service. Thank you.

Christmas bucket collectionCould your firm help?

Inspired? Get involved...Get on your bike...

info@chsf.org.ukto get involved contact

0113 392 5742

Children’s Heart Surgery Fund Room 003, B Floor, Brotherton Wing,Leeds General Infirmary, Leeds, LS1 3EX

E: info@chsf.org.ukT: 0113 392 5742

Organise an event

London to Paris Bike Ride 2016Experience the ultimate London to Paris bike ride with Global Adventures – and end your adventure watching the finale of the Tour de France. 299 miles in four days through glorious English countryside and quiet French market towns. See www.chsf.org.uk events section for more details.

Become a corporate supporterFrom volunteering opportunities to gifts in kind or charity of the year – there are lots of ways for your firm to get involved and help us.

Got an idea? We’re here to helpWhether you’re running a cake sale and coffee morning, head shave, or organising a ball – whatever your event we’ll support you all the way. Get in touch to order your fundraising pack, which includes lots of exciting ideas for events and challenges!

Could you help us?We need volunteers to help at our annual Christmas collection at Leeds train station on Friday December 4th. Could you sign-up to volunteer for a two hour slot?