Children’s Heart Surgery Fund is thrilled to be nominated in the group category for the Yorkshire Children of Courage Awards!!

The winner is decided by public vote and will be announced at the awards ceremony on Friday 13 October! Please vote at

. It takes less than a minute and closes at midnight on 12 October.

Here are some of the reasons why our wonderful supporters are voting for us!

Don’t forget to create your own ‘I’m voting for Children’s Heart Surgery Fund because…’ sign!

and send us your photo.

Sally Hall is a paediatric trainee in the West Yorkshire area, and your donations are helping fund her current research post.

From August 2017, Sally has taken up a research post at Leeds University funded by Children’s Heart Surgery Fund.

She will be spending time in the Leeds Institute of Cardiovascular and Metabolic Medicine laboratories, supervised by Professor Beech.

Sally says:

I will be looking for a protein called piezo one, which has a role in the development of vascular disorders. I will be looking at its role in a condition where it’s involvement is already known (non immune hydrops fettles). With this information I am hoping to begin to investigate whether it has a similar role in the develop Usment of congenital heart disease.

She hopes she will be able to obtain funding for a prolonged research period.

If her investigation is successful, then it should lead to an increased understanding about why some babies are born with congenital heart disease.

She has worked in many hospitals across the region including Leeds, Airedale and Calderdale.

Sally has an interest in paediatric cardiology and this is where she hopes to develop her future career.

She says:

I worked on ward 51 for a 6 month rotation from August 2015 to February 2016 and more recently have worked on PICU (Paediatric Intensive Care) looking after the post op. cardiac children.

We’re proud to be supporting Sally’s research post financially, and she’s equally appreciative of our work:

I am aware of the great work Children’s Heart Surgery Fund do in bolstering the Leeds Congenital Heart Unit with equipment and facilities. It’s also important to fund the research to stay one step ahead of this disease.

Leila is a general paediatric trainee and your donations are helping to fund her joint clinical and research year.

The research being conducted is hugely important to patients and clinicians alike:

My research element is to look at what happens to CHD babies born at less than 35 weeks gestation, so if they’re more than 5 weeks early or weigh less than 2.5 kilos.

Pre or neonatal babies are all at heightened risk of getting infections and problems with their bowel and lungs as they’re not finished developing.

The idea is to get a clinical database of all the CHD babies looked after at LGI and Sheffield to find common threads.

She adds:

When we’re called to talk to a mum about a baby whose been born early with a heart problem, we can then give them some realistic info about what the future holds for them. Through this database we’re looking at things like survival – 30 day survival and a year survival. Also, how long are they in intensive care, or do they have lots with tummy infections. All this gives families a richer view. As a parent you can only prepare yourself so much, and when things happen it’s really good or bad news for families, but a bit of knowledge really helps. The research findings will also be brought into professional circles, like clinical conferences for example.

Previously, she mainly worked within the South Yorkshire region and explains how she developed an interest in paediatric cardiology:

We have registrar exams that we have to do so I went along to Dr John Thomson’s Sheffield clinic and just absolutely loved it, it was amazing. From then, I worked at a few of his clinics there and came across to the catheter labs here at Leeds General Infirmary.

Since then, Leila has continued to develop her passion for paediatric cardiology.

Leila will continue to learn to be a cardiologist, including being on the registrar rota and learning echo cardiography.

It’s been a really steep massive learning curve, there’s still so much to learn but it’s just fascinating. It’s fully confirmed what I want to do as a career.

Andy Deakins is fundraiser of the month for August, and has shown why both team and family spirit is so important.

Andy fundraises for Children’s Heart Surgery Fund because two of his cousins have babies born with heart conditions, Reggie and Honey-Rose.

Reggie was born with half a heart (hypoplastic left heart syndrome) and multiple congenital heart conditions.

He had open heart surgery lasting 9 hours at just 4 days old in September 2016, followed by the Glenn procedure in January.

Reggie’s next surgery is planned for when he reaches 3/4 years old, and then his only other option is a possible heart transplant.

Honey-Rose was born with right arterial isomerism amongst other serious heart defects.

She was expected to pass away after a few days, but showed amazing fighting spirit and had her first open heart surgery after 3 weeks.

Like Reggie, her life span is hard to predict at present and she will need subsequent open heart procedures.

Andy told us they inspired him to fundraise:

These babies have had a tough start in life but they have proved how strong they are. If it wasn’t for Children’s Heart Surgery Fund and the hospital, these two babies plus others’ babies wouldn’t be with us today.

So he organised a charity football match in Grimsby to help raise funds, and recruited 30 players including family and friends to play a competitive game.

Along with the match itself, he organised a magician, face painter and raffle which included over 100 prizes.

Andy was also interviewed by Miss Grimsby (aka Laura), in her former guise as a reporter for the Grimsby Telegraph!

We asked Andy for his fundraising advice for others planning to host a charity event:

The best advice is to plan in advance and advertise as much as you can. I purchased posters and banners and even got in touch with local press and radio stations to make this event as big as I could. They did this by advertising my event on a weekly basis and put my interview on the radio on a weekly basis too. This brought massive awarness to my event and I had people emailing me and ringing me up wanting to donate money and prizes. I also made Facebook groups up and an event page, and got family and friends to share the pages as much as they could.

It’s thanks to the support from amazing people like Andy that Children’s Heart Surgery Fund can funnel your donations into hospital accommodation, equipment and resources.

Find out more about fundraising on our

page

We are thrilled to have launched a new story and activity book for children,

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The book is a step-by-step guide for children with congenital heart disease showing what happens before, during and after open heart surgery.

Katie Bear shares her story, top tips and ideas for activities, encouraging children to ask questions, talk about their operation and feel in control of their hospital journey.

The book was written by Senior Clinical Psychologist Dr Rachel Avison and Children’s Cardiac Nurse Specialist Mike Fresson, with illustrations by Ossett-based designer

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Watch video

Rachel and Mike said:

This child-friendly guide provides an introduction to hospital and explains what children can expect, from meeting the surgeon to having the operation and returning home. We know that the more prepared children are before they come into hospital, the better their experience.

Harry Webb, a young patient, joined actor Dominic Brunt and the book creators for the launch on Tuesday 1 August (pictured above).

• Patients (aged up to 10 years old) will receive a free copy of the new book at their first hospital meeting, after heart surgery has been agreed. Please speak to your Clinical Nurse Specialist for more information.
• Patients who have already had their first meeting, or had heart surgery between 1 February – 1 August 2017 can request a free copy. Please email info@chsf.org.uk with your address, child’s name and date of surgery and we’ll post one to you as soon as we can.
• You can also buy the book online for £3 (plus £2 postage and packing) or from our Brotherton Wing office for £5.

If you have any questions, please email

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We’d love to hear your feedback too, so please get in touch!

Rob Hull is fundraiser of the month for July! His support has been out of this world!

Rob chose to fundraise for Children’s Heart Surgery Fund because of the support the charity gave to his daughter Becky and granddaughter Georgie, back in December 2014.

Georgie was born with Turner Syndrome. She had to undergo a number of lifesaving surgeries to fix aortic arch and multiple VSDs (Ventricular Septal Defects).

Rob happens to be the Guinness World Record Holder for the largest Dalek collection and uses his pepperpot pals to raise money. He said:

I own a full-size fully remote controlled talking Dalek, I take it to Comic Cons and Sci-Fi events and trundle him around with a collection tin on the end of a claw. People find it amusing and are more than willing to put money into the collection tin because of the novelty side of it. I have been doing this now for about 18 months for the charity.

Although Daleks are notorious baddies from TV’s Doctor Who, it’s a long-standing theme of the show that “love conquers all”. Rob’s use of the Doctor’s arch-villains would no doubt get the approval of the Time Lord himself.

We asked Rob what Children’s Heart Surgery Fund meant to him, and he told us:

Nothing I say to this charity and hospital could tell or show how grateful me and my family are. Not just saving my grandchild’s life but also for the help and support we all got in the first 2 months of Georgie’s life. Our daughter Becky was able to stay at the hospital the full two months as well.

It’s thanks to the support from amazing people like Rob that Children’s Heart Surgery Fund can continue to provide hospital accommodation, equipment and resources.

Find out more about fundraising on our

page.

Natalie Day is our Fundraiser of the Month – and here’s why!

From coffee mornings to toy sales, ladies night to a 75-mile bike ride, Natalie has organised numerous events to raise valuable funds for our cause, and is always looking for new ways of raising money.

Natalie is a tremendous advocate of ours across social media, and can often be found offering sharing our posts and supporting others in our online community group.

She is also a regular at CHSF’s scheduled events with her family, like our

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Natalie’s inspiration comes from her 3-year-old daughter Isabel who was born at LGI with congenital heart disease (Tetralogy of Fallot, Double Outlet Right Ventricle and Ventricular Septal Defect).

Isabel spent her first week in the neonatal unit before being transferred locally – the family live in Worksop.

She then came back to Leeds after an emergency transfer at 3 months after her sats started to drop, and had open heart surgery just over 2 weeks later.

As Worksop is a long distance away, Natalie told us the parent accommodation we fund was particularly beneficial:

Having accommodation provided during one of the hardest times of our life really helped especially with being 60 miles away from home. Our first stay lasted 3 days and then a week for surgery. Knowing that we didn’t have to worry about anything really helped and took away the extra pressure.

She also described what motivates her to keep involved in our charity, and how proud she is to have been nominated for our award:

I’m so thankful for everything CHSF does in supporting families with children with CHD, the work the team puts in is amazing. Thankyou so much for nominating me, my first thought was WOW… really? But I couldn’t have done it without the support of my family, friends and local heart families.

Natalie’s next fundraising venture is a Race Night at Sheffield in September, and if anyone would like more information they’re very welcome to contact her at

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She has this advice for anyone thinking about getting involved with some community fundraising:

If your thinking of doing an event contact the team, they’re fantastic and offer great support! Use the website – there’s lots of tips and resources to help! Don’t worry how much you raise because every penny helps to support the unit and is very important for our children’s futures.

There’s no better way for us to tell the story of our charity than sharing your experiences.

You can help us spread awareness of CHD and the support we give to patients and their families, which in turn could generate more funds.

We’ve devised a straightforward questionnaire to help you frame a case study for us. To find out more, email

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Mother-of-two, Marie Lees, has personally benefited from the funding provided by CHSF.

Her son, Ben (3) was diagnosed with transposition of the great arteries, coarctation of the aorta and a large VSD.

On 23 May 2014, at nine days old, Ben underwent open heart surgery at the LGI and further surgery at eight months old after his aorta failed to grow.

A public relations director for Leeds-based agency,

, with 14 years’ experience including raising awareness of charities and good causes, Marie explains the appeal of case studies:

Case studies are the most effective way for a charity to engage not only with the media but potential donors too. A charity telling people about the great work they do is a given, as they want people to donate. But case studies who can explain the difference a charity has made to them at a difficult time are more effective and engaging, as they are emotive and human interest stories resonate with people.

The voices of the people we help are the best way to demonstrate our charity’s impact.

Take our recent story of brothers Adam and Usman Masood in

for example.

Stories like this SHOW people how effective we are, rather than simply telling them.

All stories of CHD patients are incredible and moving, although it may be that some are a better fit for particular forms of marketing than others.

We can add your tales to our

and will potentially use your words, feedback and pictures on social media and in our magazine.

There’s also the potential for local and national press, although we would have a separate conversation with you if this was a possibility.

If you can help please do get in touch by emailing

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We’re very pleased to announce Emma Brook as our first ever Fundraiser of the Month!

You can read about the background to our Fundraiser of the Month award here.

Emma, from Batley, has managed countless fundraising activities on our behalf and is inspired by her 7-year-old son, Alfie.

Alfie has 4 heart conditions – VSD, Transposition of the Great Arteries, Mitral Atresia and Double Outlet Right Ventricle.

In basic terms, he has half a heart – we should have 4 chambers, and he only has 2.

He has had 6 hospital procedures so far, and also had a stroke a few years ago.

The fundraising events Emma has organised include Family Fun Day, Ladies Night, Races Night, Pink Tribute, Car Boot Sale, Supermarket Bag Packs, Cake Sale and Raffle.

She has also recruited 11 people to take part in a charity Skydive on May 19.

Although not taking part in the Skydive herself, Emma is project managing the group from encouraging them to take part to organising the deposit payments.

Emma told us what Children’s Heart Surgery Fund means to her:

CHSF have helped us so much at the hardest of times, we’re forever grateful.

I really admire how CHSF are constantly trying to make things better for heart patients. And you’re always trying to improve things, for example the new heart theatre through Keeping The Beat.

I like the personal aspect of CHSF. Being able to speak to the same person about fundraising encourages both our trust, and I enjoy coming into the office to visit.

Emma is particularly grateful for the parent rooms allowing patient families to sleep over, and forward-thinking clinical equipment which CHSF funds have provided.

Alfie has an INR Kit, which means he can test his blood from home and send in the results, and Emma told us she doesn’t know how they’d cope without it.

Emma told our Community Fundraiser Alex Green she was “chuffed” and we had “made her day” when told she was our Fundraiser of the Month.

She continues to be an amazing advocate for our charity and we’re hugely grateful.

are offering all CHSF supporters 10% off their industry specialist training courses.

You simply have to mention”CHSF” when booking.

They offer courses in first aid, plus teaching and assessing, paediatric provision and health and safety.

We can vouch first-hand for the excellent courses offered by

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Our Events Manager, Holly Rawlings, joined me (Marketing and Communications Manager, Andy McNally) on their Emergency First Aid At Work course in Leeds in mid-March 2017.

We spent a very enjoyable and informative 6 hours learning lifesaving skills that can be used in and out of the workplace.

The course was very practical and covered all the roles and responsibilities of a first aider from the recovery position through to CPR, not to mention vital lessons in treating shock, seizures, bleeding and choking.

Instructor Bill Casserley told us:

We run monthly Emergency First Aid courses that include adult, child and infant protocols so that candidates can help any age group. The worst case scenario for anyone is to be involved in an emergency and not know what to do. Just some basic knowledge can help improve confidence and may even save a life. First aiders are not expected to perform the role of a paramedic or doctor but can learn simple practical skills that can make a crucial difference when an accident or illness arises. Our monthly courses in Leeds provide useful information in a laid back and relaxed environment.

You can find out all about Train Aid and book courses on their website, which also contains some

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