Brave HeartsChildren’s Heart Surgery Fund

Issue 5Winter 2013

How you can help young

heart heroes like Oliver

Meet the LGI's new head of surgery

Wear Red Day is back – all you need to know inside

Registered charity number 1148359

Children’s Heart Surgery Fund2 Contents Visit us @ www.chsf.org.uk 3Welcome

Children’s Heart Surgery Fund Director Sharon Cheng on exciting times for the LGI's heart unit and its patients

The last few months have brought lots of positive news for the heart unit at the Leeds General Infirmary, its staff, patients and all here at the ChSF.

After working under the threat of closure during the national Safe and Sustainable review of surgery, the success of our Save Our Surgery campaign means a second review that promises to be more open and transparent. You can read more about the new review on page eight.

In the meantime, the unit continues to go from strength to strength – with the fantastic new paediatric intensive care facility being officially opened by the Countess of Wessex.

And the unit has a new head of surgery, Carin van Doorn, following the news of Kevin Watterson's planned retirement next year. You can read our interview with Carin on pages 16-17, and I'm sure you will all join me in wishing Kevin every happiness in his well-earned retirement.

he has saved so many children and adults over the years and we have been inundated with messages of

thanks to him in recent weeks. We are absolutely thrilled that three of our patients – Libby, Joe and Isabella – won Yorkshire Children of Courage awards. All the children treated on the unit are so special, and it was fantastic to see this recognised.

We've been busy spending the money raised by our generous supporters and can bring you news of some fantastic projects.

For example, we've taken our spending on family accommodation at eckersley house to more than £335,000 with another £35,000 grant. And we've agreed to fund a two-year post to develop research and innovation for the unit – more on that in future issues of Bravehearts.

We're very excited about the return of Wear Red Day, and hope hundreds of schools and businesses across the Yorkshire, humber and North Lincs region will join our annual

fundraising day. Find out more on pages 10-11.It's only with your support that we can fund more vital

work and, as always, we thank you from the bottom of our hearts. enjoy your new issue of Bravehearts!

Celebrating the brave kids and amazing staff

“”We are hoping hundreds of schools and firms join in Wear Red Day

Sharon Cheng

Three patients from the heart unit have scooped prestigious Yorkshire Children of Courage awards. Libby Carstairs, Isabella Cook and Joe Barry each took home a prize at the star-studded bash in Leeds to recognise children's achievements across the medical and charity sectors. Paralympian double gold medallist Hannah Cockroft MBE was on hand to honour the winners and nominees while the night was hosted by BBC TV presenter Steph McGovern and Britain's Got Talent star Jack Carroll, himself a former winner at the event.

What the CHSF doesThe Children’s heart Surgery Fund is a registered charity based at the Leeds General Infirmary.

We fund vital equipment, resources, research and training for the treatment of children and young adults with heart defects.

We provide a support service for the children and their families by refurbishing the family rooms and playrooms on the wards and contributing to the hospital’s parent accommodation.

We fund key staff posts, and provide travel and other grants to families in their time of need.

Our aim is to ensure these children have the best possible chance of survival. Our hope is to give ‘each child a childhood’.

Say hello...Phone0113 392 5742

Emailinfo@chsf.org.uk

Webwww.chsf.org.uk

FacebookSearch for the Children’s heart Surgery Fund group

Our mascot Katie Bear

Inside57810121719

BraveHearts is produced by Zip Media & Communications – www.zipmedia.org.uk.Cover photograph courtesy of the Pontefract & Castleford Express. BraveHearts is printed by Resource Print Solutions – www.resource-ps.co.uk

Save Our Surgery: Latest news as NHS

starts second review

Can you help us? How you could be a CHSF volunteer

Approved spending: How the money you raise helps patients

Meet the team: We talk to new

head of surgery

Family stories: Be inspired by Ruby's journey

Katie's Club: Meet some of

our heart heroes

Wear Red Day: How you can

join in the fun LiTTLe Ava Grace Fletcher inspired her dad Robert and aunty Lisa to cycle more than 170 miles from Morecambe to Bridlington.

Ava, who was born in March with pulmonary atresia, VSD and major aortopulmonary collateral arteries, has already had two open heart surgeries and will need further operations. Ava's mum Laura told us that, at

one point, Ava was given just hours to live. But Laura said she is now "coming on leaps and bounds", adding: "We are so grateful to the staff at the LGI – we can't thank them enough."

The Coast-to-coast cycle raised a fantastic £1,500 and Ava's family are planning another fundraiser – a 'We Heart Leeds' charity night in November.

Pair clocks up the miles for little Ava

say meRRy chRistmas with us

● Five beautiful designs● Prices from £3.00 per pack of ten cards● Free postage and packing on all orders

support chsF by buying your cards at www.chsf.org.uk/shop

Children’s Heart Surgery Fund4 News Visit us @ www.chsf.org.uk 5News

The CHSF team...

Angela Casey,Finance and Admin Assistant“My job is to do the finance and admin for the CHSF and to help out in other areas when needed. I get great satisfaction seeing what a difference donations can make to the children with heart defects. I also enjoy meeting parents and working as a team.”angela.casey@chsf.org.uk

Sharon Cheng,Charity Director“My day-to-day responsibilities include maintaining and encouraging new corporate partnerships and supporting some of our fabulous parents with their charity events. I have to ensure good governance and keep our Trustees up to date. I direct the SOS campaign, liaising with MPs, our PR company, the hospital, councillors and the media. My work is personally challenging yet rewarding!”sharon.cheng@chsf.org.uk

Debbie Field,events Co-ordinator“I’m responsible for all organised events, which I help to create, organise, promote and

manage. I enjoy meeting all of our supporters and I am proud to be part of the CHSF family. I’m looking forward to meeting more of you at the events I have planned for 2014!”debbie.field@chsf.org.uk

Claire Priestwood,Community Fundraiser"I'm responsible for providing guidance and help to our supporters organising their

own events, recruiting volunteers, raising awareness in schools/clubs and promoting events and activities. It’s a great job and I couldn’t imagine doing anything else!claire.priestwood@chsf.org.uk

GOOLe Mayor Stephen harrison has helped raise £4,500 for ChSF after choosing us as one of his charities of the year.

As well as raising so much money through a variety of events, Cllr harrison was a major supporter of the Save Our Surgery campaign to keep surgery at the Leeds General Infirmary. Cllr Stephen Harrison, the Mayor of Goole, visiting the heart unit

Katie’sNEWS rouNd

● The staff of the heart unit were shortlisted for the team of the year prize at the Yorkshire Evening Post's annual Best of Health Awards.

Unfortunately, they were pipped to the prize by the Leeds General Infirmary's head and neck team but, as the host of the ceremony, BBC Look North's Claire Frisby said: "What was clear from all the nominations was that every individual or team put forward was worthy of public praise.

"everyone on the shortlist should feel extremely proud of their achievement."● BaRBaRa Farey and husband Dave raised more than £500 through their stall at the ackworth Gala. The Farey family have beewn raising money for CHSF for many years, through the gala, sky dives, a naked calendar and other events. Barbara and Dave's son Paul was a heart patient who passed away in 2011, aged 36.● LiSA Stubbs is organising a Christmas craft and gift fair on Saturday December 7th to raise funds for CHSF. The fair will be held at Riley Smith Hall in Tadcaster from 10am until 2pm and entry is free. There will be lots of stalls packed with goodies, a charity tombola, a cafe and lots more.

Little Libby bowls over cricketersheArT hero Libby Cotton inspired a charity cricket match that netted over £3,500 for CHSF and the Calderdale bravery award scheme.

The four-year-old's dad Wayne organised the 20/20 match between Bradshaw Cricket Club's Sunday team and local residents, and arranged raffles and a sporting memorabilia auction.

Libby, who recently had a mitral valve repair, is pictured with a framed photo produced with nails and thread by one supporter and donated to the CHSF.

FUNDRAISERS Darren and Susan Vaines have raised another £5,000 for ChSF – bringing their total for 2013 to more than £10,000.

After completing the Yorkshire Three Peaks in June, they recently hosted a sportsman's ball for their charity Oliver's Army – set up in celebration of their son Oliver (this issue's cover star) – which raises money for CHSF. One hundred and fifty guests attended the ball at the New Wheatsheaf in Castleford.

One year old Oliver has had surgery for tetralogy of fallot and will need further operations.

Oliver's Army marches to £10k raised

Compere Mick Morgan, ex-Wakefield Trinity and Man of Steel. (Left) Organisers Darren and Susan Vaines and (below) Darren with guest speaker Roy Dickinson, ex-Leeds and Great Britain rugby league star

After SOS joy, CHSF ensuring patients' voices heard in new process

NHS starts second national review bidThe new national review of children's heart surgery by NhS england has started – and is aiming to decide a plan for the future by June 2014.

The original Safe and Sustainable review, which had decided that the Leeds General Infirmary would stop performing surgery, was suspended by health Secretary Jeremy hunt in June.

That move, which was welcomed by ChSF, followed our Save Our Surgery campaign, SOS Limited's

victory in a high Court judicial review, and an report by the Independent Reconfiguration Panel that criticised the review.

The new review is looking again at all aspects of surgery across the country, and has promised to include services for adults with ChD – something the ChSF campaigned for. ChSF met with the review team and other regional charities and will continue to play an active role as the review progresses.

ChSF Director, Sharon Cheng,

said: "We hope that the new review will be more open and transparent than the original process. We'll work constructively with the review team to help achieve the best outcome for patients, and will make sure our concerns from the first time around are taken on board."

NhS england are publishing a fortnightly blog about the review's progress, which can be found on www.nhsengland.co.uk, and ChSF will post links and updates on our Facebook community group.

Goole Mayor leads town's fundraising

can youR FiRm helP?If your firm could help the CHSF by holding a fundraising event, volunteering or considering us as your charity of the year, please contact sharon on 0113 392 5742 or sharon.cheng@chsf.org.uk

Children’s Heart Surgery Fund6 News Visit us @ www.chsf.org.uk 7News

Katie’sNEWS rouNd

● The third annual heart to heart Valentine's Ball in aid of ChSF will take place on Saturday February 8th at the Royal York Hotel in York. Tickets are £45 each, or £400 for a table of ten, and can be booked via the office on 0113 392 3987.● SuE Everson, pictured with heart patient ava, raised money for CHSF in dramatic style – by having her hair shaved off! Sue's brave challenge raised a fabulous £620.

● hUGe thanks to Barnsley-based firm Premdor, who have chosen ChSF as their new charity partner. Premdor is one of the UK's leading joinery manufactures.● TRaCEY Scanlon is organising her annual dinner/dance to raise funds for CHSF. The event will be on Dec 14 at the Irish Centre on York Road in Leeds, and there will be a meal, live band and DJ. Contact Tracey on 07872 163 697 for tickets (£30pp with payment by Nov 25).

YOuR charity needs you! We're searching for a team of volunteers who can help raise awareness and funds for ChSF.

ChSF's community fundraiser Claire Priestwood is working on some new and exciting volunteer opportunities and would like to hear from anyone who is interested in registering for any of the roles.

Claire said: “Volunteers are at the heart of every charity and every day we see the passion and enthusiasm our supporters have for the cause.

“Increasing the volunteers we have will enable us to raise more funds and awareness of the charity and the work of the heart ward and

Collecting tins at the ready for Katie

Katie’sNEWS rouNd

● WE'RE looking for volunteers to shake our collecting tins at Leeds train station on Friday November 29. We'll be there from 8am-6pm and need volunteers for the morning and/or afternoon. Please contact us on 0113 392 3987 if you are able to help – thanks!

● LINTHwaITE Clough school's pupil council has chosen CHSF as their main charity this academic year. The charity has a special place in the heart of the school as three pupils, Ben Pogson, George Sutcliffe and Joel Bearder are heart patients. Joel's older brother Lucas (pictured together) is head of the council and chose CHSF.● MASSIVE thanks to Roomzzz Aparthotel near the LGI, who have donated 20 free rooms per year for parents to use while their children are in hospital.● OuR family Christmas carol concert will be on Sunday, December 8th at 2.30pm at Leeds Cathedral, and will feature Cononley Singers. Tickets are £5, or £3.50 for children and concessions, and can be booked by calling 0113 392 3987.

the paediatric intensive care unit. We are looking for individuals who have some time to offer making a real difference in their local area. We have many roles on offer varying

from level of time and commitment need and location.

“Many of the roles are flexible to fit around your other commitments, and are a brilliant way to get involved with your community and to give something back, and we’d love you to be a part of it.”

The current volunteering opportunities include street and supermarket collection organisers and helpers, collection can coordinators, fundraising car drives and office-based project coordinators. If you think you have a few hours to spare and would like to know more, please contact Claire on 0113 392 5093.

Hilton staff go to the ends of the EarthEMPLOYEES at the hilton in Leeds city centre got on their bikes to take in an 'around the world in a day' challenge to raise funds for CHSF and Martin House Children's Hospice.

The challenge is hosted by hilton hotels across Europe for a range of good causes, and those taking part are encouraged to run, walk,

bike and swim to reach a combined total of enough miles to lap the Earth twice!

CHSF and Martin House are the Leeds city centre Hilton's charities of the year for 2013, and staff have taken on a number of fundraising challenges – including the Yorkshire Three Peaks.

From collecting cans to office projects, we've got something for all

Could you volunteer and help heart kids?

DOzeNS of children, their families and even Katie Bear took to the paths of Roundhay Park in Leeds to support ChSF in the Give A Gift 5k fun run.

The event, which looks set to have raised around £7,500, was the latest in a series of activities being organised by Give A Gift, a partnership of organisations from the Muslim community.

The group launched its

fundraising efforts during Ramadhan, when they collected and donated hundreds of toys to the heart unit. Other events are planned, including a fashion show.

hanif Malik, CeO at hamara, said: "We were overwhelmed by the response to the toys appeal and the Give A Gift 5k was another wonderful opportunity for members of the community to come out and show their support

for the fantastic work carried out by the children's heart unit."

ChSF director Sharon Cheng said: "We are extremely grateful to Give A Gift, a wonderful organisation that has already brought a lot of joy to patients with their toy donation and has now raised a fantastic sum of money through the 5k run. We're really excited about working with hanif and colleagues on further events."

Ward toy donation and fun run kick-start charity partnership

Give A Gift runners give CHSF their all

The Give a Gift runners, and our very own Katie Bear, line up before the start of the event in Roundhay Park

(above) Runners with Katie Bear and (left) Give a Gift supporters donate hundreds of toys to the unit

Children’s Heart Surgery Fund8 How we spend your money Visit us @ www.chsf.org.uk 9How we spend your money

Thank you!

● Buying a hand-held mini doppler machine to be used on Ward L47● Buying wall art for the new anaesthetic room, theatre and catheter recovery rooms● Paying for the furniture in the parents waiting area on Ward L47 ● Spending nearly £60,000 on an echo machine for the fetal cardiology department● Allocating funding for two years for a new consultant to develop a research and innovation portfolio● Getting a broadband contract for Ward L12 so patients can get on the internet● Buying a birthday present for a long-term patient on Ward L12● Buying portable DVD players and DVDs for the outpatient department● refurbishing the breastfeeding room on Ward L12● Buying two new microwaves for the parents' kitchen in the Stables● Getting new reward stickers for various wards and clinics

Here are just some of the projects we've funded in recent months. Some are expensive, some are cheap. all help to make a big difference...

One of four new sets of waterproof scales we've funded for ward L47, which help make sure urinary catheters can be removed at the earliest opportunity to improve the patient's comfort, and reduce the risk of infection. They were funded by Darren and Rebecca Perella

Docking kit helps PICU patientsVITAL equipment bought by CHSF for the new children's intensive care unit at the LGI is now in place.

Thanks to your donations, we spent nearly £25,000 on 11 syringe pump docking stations for Ward L47.

After surgery, structured control of medication is needed and some patients will need up to 12 pumps

– making this kit a vital part of safe treatment.

Debbie Smith, PICU's senior sister, said: "I would like to thank people who donate money and time. The docking stations have made a big difference to the unit and time efficiency, which will impact greatly on patients. Thank you from the PICU team."

Staff nurse Julie wells with one of the new docking stations

Alexa's memory ball raises £2k towards online overhaulThe heart unit will get a brand new website, thanks to funding from the ChSF.

The new site, which will be aimed at patients and parents, will replace the current site at www.childrensheartunit.org.

It is being developed and will be launched next spring. Once live, it will be packed with information, videos, photos and links to help

support patients and families. Dave Wilson holds an

annual ball to raise funds for various children's charities in memory of his daughter Alexa, who passed away in 2009 aged nine. This year's ball raised around £2,000 for ChSF, which Dave asked to be put into the website project. ChSF community fundraiser Claire Priestwood said: "Dave

and his family have raised around £10,000 for ChSF over recent years, and we're thrilled the proceeds from this year's ball in memory of Alexa will be going to the new website project – something that all patients and parents will benefit from."

Funds raised at Oliver's Army ball (see page five) will also be spent on this project.

Funding for new LGI unit website

ChSF has awarded another £35,000 towards the annual running costs of eckersley house, the flagship parent accommodation at the Leeds General Infirmary.

That means that – thanks to your generous support – since 2010 we've been able to grant more than £335,000 to

The Sick Children's Trust, the charity that runs the house.

That figure includes £250,000 to help build the house, which has now helped hundreds of heart families by giving them a place to stay while their child is a patient on the unit. ChSF's Claire Priestwood said: "We

are delighted that we can continue our partnership with eckersley house, and carry on giving families some very practical support at a really difficult time.

"eckersley house is a great facility and supporting it is absolutely core to ChSF's work."

CHSF's Claire with Eckersley House fundraiser Laura Leverton

Eckersley House gets £35k boost

This new lockable notes trolley now being used on ward L12 was funded by your donations

we funded a new state-of-the-art monitoring system for ward L12 that cost more than £110,000. The system brings lots of benefits – such as wireless monitoring so patients don't have to be confined to bed while their vital signs, temperature and oxygen saturations are taken and displayed on a screen in the nurses/doctors station. CHSF wants to thank all our supporters, whose generosity means we can fund equipment that really makes a difference

we've bought this chest trolley for ward L47. It's used for emergencies and holds equipment that opens chests in a hurry – potentially helping to save lives

Even the ever-popular fish on ward L12 have got a brand new tank thanks to all your fundraising!

Thanks to all our

supporters – you are how we can fund these

projects

Children’s Heart Surgery Fund Visit us @ www.chsf.org.uk 11Features10 Features

It's a welcome LGI return for surgeon CarinWelcome back to Leeds – can you tell us about your memories of the unit when you worked here before?

I did part of my training in Leeds at the old Killingbeck hospital and at the LGI and then I was a consultant here for nearly three years, it was my first consultant job, working with Kevin [Watterson]. I started as a consultant in 1999 and was here for about three years.What have you made of the Leeds service since you've been back?

When I came to look around I found there had been a lot of good changes.

I was working in Denmark at that stage but actually quite wanted to come back to the NhS – so it was a very positive choice to come back here.

I think that the way Leeds is now set up – that you've got both the adults and the children's services at the same location, and a brand new children's hospital – is very good.

Also, there are fabulous staff – a fantastic cardiology team and also excellent surgical and anaesthetic colleagues, some of whom I've known for many years. I think the whole congenital team is a fantastic team.

The national Safe and Sustainable review has caused uncertainty about the future of surgery in Leeds and led to the CHSF's Save Our Surgery campaign. What's your message to parents still worried about the future?

I have a lot of respect for the way the campaign was fought.

There is obviously still a certain amount of uncertainty in the whole of the uK about

the whole Safe and Sustainable process, but I think that Leeds has all the building blocks in place to be a fantastic player in that and there is a very large special population here that deserves a local service.You used to be a trustee of CHSF. How important to the unit is the charity?

ChSF plays a major role because in the NhS the focus is on more the mechanics of how you treat a patient. There is a lack

of funding in the NhS and therefore they have to be very focused on how they spend their money.

There are a number of needs which may not necessarily be the direct patient needs but are very important family needs that can not

“”In theatre you put emotion to one side – you are just there to do a very good job

New Head of Congenital Cardiac Surgery, Carin van Doorn, trained in Leeds at both the LGI and Killingbeck

“”

CHSF plays a major role. There are a number of very important family needs that can not be fulfilled by the NHS – that is where charities play a very, very important role

WiTh long-serving cardiac surgeon and CHSF chair of trustees Kevin Watterson planning to retire next year, Leeds Teaching Hospitals Trust has hired renowned Dutch consultant Carin van Doorn as the new Head of Congenital Cardiac Surgery. We caught up with her a couple of weeks into the new job...

be fulfilled by the NhS and it's also not their remit. So I think that is where charities play a very, very important role.Parents often tell us they are amazed at how surgeons manage to do such a difficult and emotional job. How do you see your role within the cardiac team?

As a surgeon you need to detach yourself emotionally – you have to be very focused. Once you are in the operating room you put your emotion to one side.

You are just there to do a very good job and to work together with your team – as isolated people we can't do that.

everyone plays a different role in that team – the nursing staff are much better equipped and much better trained to give more attention to the different needs of a child and of the family as a unit.

My main concern is to make sure that the heart as a pump functions well. I will give them the necessary updates and will treat them with a lot of respect, but there are lots of needs of that family that in my role I can not meet.

The real challenge is to get a group of people together that compliment each other and make sure that all the family's needs are identified.

It's so very important that you are able to act on those and, I have to say, I think it's a very good unit here.

“

”

The way Leeds is now set up – that you've got both the adults and children's services at the same location and a brand new children's hospital – is very good. Also, there are fabulous staff – the whole congenital team is fantastic

Children’s Heart Surgery Fund12 Family stories Visit us @ www.chsf.org.uk 13Family stories

Mum Natalie tells how baby Ruby's routine newborn check changed their lives...

'We were totally wouldn't survive

could do once he could see her heart. We were petrified but knew that without this surgery she would die anyway.

handing her over to the surgery team was probably the hardest thing we have ever had to do but we knew she was in the best hands and without this operation... well, it doesn't bear thinking about.

After the longest day of our lives, we got the call to say she was out of theatre and recovering in intensive care and seeing her again was such a relief. She was so pink and looked so well.

Ruby recovered well and was off her ventilator and breathing by herself after just 14 hours, and was back up on the ward two days post-op.

We took Ruby home six days after her surgery and she has come on in leaps and bounds. She has now caught up with all the other children in her milestones and gained the weight she needed very quickly. The difference in her was amazing.

Today Ruby is a lively, busy chatterbox who does not let her condition stand in the way of

leading a normal life. She attends mainstream school, is excelling in her learning, loves being around other kids and has made lots of friends.

She knows her limits and knows when to have time out to rest and she has coped so well with what life has thrown at her so far

It was a massive shock to be told how poorly Ruby was and what would face us for the rest of her life. We struggled at first to accept her condition as we didn't know what the future would

to be a certain size before that could be attempted and she struggled to gain weight.

We visited cardiac outpatients every three months and after about a year Ruby was showing

signs she needed her next operation as she became blue and breathless and wasn't meeting her milestones.

I received the phone call I was dreading on the December 19, 2010 to say Ruby was now at the top of the surgery list and a bed was ready for her and she needed to go into hospital in two days' time. There was then a mad rush to see family as we had to cancel all our Christmas celebrations.

Ruby underwent nine hours of open heart surgery on December

21. The surgeon was very honest with us and said he had no pre-surgery plan for Ruby as her defect was so complex he was going to decide what he

Proud mum Natalie says Ruby has grown into a busy four year old who has copes well with everything life throws at her

Name: Ruby VarleyAge: 4 From: LeedsMum & dad: Natalieand AlexBrother: Ethan, 4mthsCHd CV: Tetralogy of fallots, pulmonary atresia with ventricular septal defect and overriding aorta

Katie’s casefile

“ ”Today Ruby is a lively chatterbox who does not let her condition stand in the way of leading a normal life. We know she will need more surgery, but we're not fazed. She's in the right hands.

“”We couldn't believe our baby girl was so seriously ill and we just didn't know

petrified but knew Ruby without this operation'

"We didn't find out anything was wrong with Ruby until she was three days old.

She was a very sleepy baby and didn't feed well at all. During a routine baby check the doctor told us she could detect a heart murmur but, as Ruby was born six weeks early this was common and we thought it would probably heal on its own.

But when the midwife checked Ruby's oxygen saturations and found out it was only 57%, she was rushed to the neonatal ward at St James's hospital and put on a ventilator.

We were devastated – we couldn't believe our newborn baby girl had been so seriously ill and we just didn't know. An eCG and heart ultrasound scan and he confirmed the awful news that Ruby had a rare life threatening heart defect and without surgery she would die.

Ruby was transfered to the heart unit at the LGI and, at that point, our lives changed forever. We didn't know if Ruby would survive.

She had her first heart operation at four weeks old. A BT shunt was fitted – a temporary measure as she was too small for her full repair. We were able to take her home when she was six weeks old. We knew the repair would follow, but Ruby needed

Ruby had a BT shunt when she was four weeks old and then nine hours of open heart surgery when she was 14 months old

how you can helPto Donate...● call 0113 392 5742● Donate at www.chsf.org.uk● send a cheque made payable to "children's heart surgery Fund" to CHSF, Room 001, Ground Floor, Old Nurses Home, Leeds General Infirmary, Leeds, LS1 3EX

to FunDRaise...● call 0113 392 5742● Download our fundraiser registration form at www.chsf.org.uk● ask for a copy of our fundraising guide, packed full of tips and an a-Z of ideas – from abseiling to zumbathons!

hold, but Ruby soldiered on and was such a happy baby. We knew we had to stay strong for her.

With the support of our family, friends and all the staff at the unit we made it through the other side. I underwent counselling through the hospital in the run up to Ruby's second operation – this helped me a great deal and I know that service is available to us if we ever need it again.

My advice to any other parents going through this is to stay strong and accept all the advice and help that is available to you as it can help so much.

We went through some very tough dark days but we had to be positive and put our daughter's life in the hands of the doctors and surgeons. Without them Ruby would not be here today.

We have had many cardiac outpatients appointments, and I'm nervous every time we go. We know that she will need more surgery within the next couple of years but we're not fazed. She is in the right hands. She has done amazingly well and we are so proud of her."

Children’s Heart Surgery Fund14 Family stories Visit us @ www.chsf.org.uk 15Fundraiser focus

'I am a person first... not a heart condition'

When Jemma Greenwood was born with a number of severe and complex heart conditions, doctors didn't expect her to live beyond her first birthday. Thirty-three years and multiple procedures later, Jemma is a national equestrian champion. Despite not seeing herself as a role model, all of us at CHSF think she is an inspiration and were keen to hear more about her riding achievements... What does your heart condition mean for your general health in the future?

My condition is degenerative and I don’t know how it will affect me in the future, but I don’t think about that – I just take each day as it comes and try to stay as healthy and active as possible. how has having a heart condition affected you?

I have a self-limiting condition and most exercising activities are beyond my capability but I have always had a go to test my limitations.

Practically, I have to plan to enable me to get around. I also need plenty of layers to keep warm as well as having trouble over the years getting footwear to fit comfortably due to problems caused by poor circulation. Also I cannot go on medium or long haul flights so holidays are limiting.

My attitude is to have a go and see how much I can achieve. I always believed that there was no reason I shouldn’t be able to do what everyone else could do. I don’t see myself as someone with a heart condition, I am a person first. My parents always treated

me like any other child and didn’t prevent me having a go at anything I wanted to try – dry slope skiing, pogo stick, bouncy castles, funfair rides, zip wires and outdoor

pursuits. They gave me a normal childhood.Tell us a bit more about your horse riding achievements...

I have ridden since I was 3 years old – riding got me out in the fresh air, is good exercise and very therapeutic. Five years ago, I started doing dressage competitions through Riding for Disabled at the Middleton Park equestrian Centre in Leeds. Since then I have been to the National RDA Championships every year, culminating this year in winning the

competition at my grade. Over the last two years I have competed in a few para equestrian competitions, leading to me representing the northern region twice at the para equestrian home international.

I also participated this year in the talent development and finished 5th overall in the senior competition.What would you say to youngsters growing up with a heart condition?

Don’t let your life be limited or defined by a heart condition. Try to find something that interests you and use it as motivation to help you achieve. That way your health and wellbeing will improve and you will earn the respect of others.

(above) Jemma winning grade three dressage at this years RDa National Championships on Harry and (left) riding Soapy to third place in the jumping competition at the same championships. Jemma was born with a double inlet left ventricle, transposition of the great arteries, pulmonary stenosis, pulmonary hypertension and other heart conditions

Coast-to-coast ride shows Alan's heart"I DID it – 127 mile coast to coast challenge in three days from Bowness-on-Solway through Newcastle on to Tynemouth and then back to Newcastle just for good measures.

On the first day I cycled to Gilsland, where the views of Scotland were breathtaking. Somehow I managed to take a wrong turn at Carlisle and headed for Cummersdale – totally off track. however, it didn’t take long to get back on the right path by turning the map the right way round.

Some of the hills were quite a challenge, especially from Warwick Bridge to Gilsland, and I have to admit on this section I was physically sick – plus, later on, I developed severe cramp.

On the second day after porridge and a banana for breakfast and then being told to get out of the dining room by the proprietor of the B&B before realising she was shouting at Alan the sheep dog (what a stupid name for a dog) I progressed across the Pennine watershed to Corbridge.

After climbing out of Greenhead there was a very welcome descent through the South Tyne Valley into haltwhistle before another summit at Smith’s Shield – all in torrential rain. I couldn’t have been any wetter if I was sitting in the bath.

After lunch and shelter under a large tree in a car park, I had a climb up to Crindledykes – the highest point of the route at 263 metres above sea level. I felt it as well – totally soaked to the skin and absolutely exhausted.

I then dropped down to hexham and entering the Tyne Valley towards my very welcome second night stop at Corbridge.

After waiting a long time for my breakfast it turned out I had asked the local painter and decorator assuming he was the waiter who coincidentally thought it funny and didn’t think to pass my order on to the kitchen (he was all in white) anyway after breakfast I proceeded to Tynemouth. With all the major climbs behind

me I followed the route to Prudhoe. I then cycled along the banks of the Tyne taking in the views of the famous bridges across the river – including the Millennium Bridge which I cycled over and then back again just for the fun of it.

I then entered the very heart of the busy fish quays of North Shields, before continuing on to my final destination, Tynemouth, where I dipped my front wheel in the North Sea.

My emotional feelings was short lived when I realised my bike milometer was showing 115 mile

and not wanting to let my sponsors down decided to decline the vehicle support lift back and cycle back the 12 mile to Newcastle (all up hill) giving me the 127 miles I'd signed up for. Job done!

I owe my life to my wife and all the doctors and nurses to whom I am so grateful. Many people supported me through many months of rehabilitation and I'm thankful to them all.

Not forgetting the main reason we did this – raising a phenomenal £2,275 for the ChSF and Together for Short Lives. Absolutely fantastic."

alan survived torrential rain, physical sickness, mile after mile of climbs, and a misunderstanding with a B&B owner and her dog to complete his coast-to-coast route along Hadrian's Cycleway

DESPITE having a triple heart by-pass only last year following two heart attacks, Alan Priestly completed a Coast-to-Coast bike challenge. He raised more than £2,275 by cycling 127 miles along the Hadrian's Wall Cycleway in support of CHSF and Together for Short Lives. This is the story of his adventure...

“”

It didn't take long to get back on the right track by turning the map the right way round...

Take on a challenge for CHSFiF the efforts of Alan or our other fundraisers have inspired you to take on a challenge for

the CHSF, we can help. Contact the CHSF office on info@chsf.org.uk or 0113 392 3987 and

we'll tell you about the challenges we have lined up, or support you to organise your own event.

“ ”My attitude is to have a go and see how much I can achieve. I always believed that there was no reason I shouldn't be able to do what everyone else could do.

Star Jemma tells us how living with congenital heart defects hasn't stopped her achieving sporting success

Children’s Heart Surgery Fund16 Features Visit us @ www.chsf.org.uk 17

Katie’s Club

It's Good To Be Different(By Amy Ball, aged 15)

I don't want to be different,I just want to be the same,Don't want people to judge me,When they only know my name.I am strong inside,But they don't know,They don't know what I've been through,They only know what I show.People use the word 'normal', I'm not normal at all,What is normal, Is it short or tall?I want to be like all my friends,Or maybe them like me,I want to be like anyone,Like anyone but me.Truth is if we were all the same, Life just might not be,I am a different person deep inside,Just want people to see what I see.I wish there were people who understood,But nobody's like me,I'm unique in my special way,That's how I'm meant to be.God made me this way,And that's how I'll live,It may not always be easy,But God knows how strong I am.Sometimes living with CHD is hard,But it won't beat me!I am stronger,No matter what it thinks.I know that im different,But that's a good thing, It would suck if we were all the same,I love being me! (Including my CHD)

A collection of photos, pictures and poems from Katie's heart heroes...

Email your photos and work to info@chsf.org.uk or post them to Katie's Club, Children's Heart Surgery Fund, Room 001, Old Nurses Home, Leeds General Infirmary, LS1 3EX. The winning poem or drawing will get a £10 gift voucher!

Superstar Issac Charlesworth had a VDS repair

and PFO closure aged 11 weeks old. In the photo, he's 18 days

post-opAmy Ball, aged 15, wrote this fantastic poem. Amy has truncus arteriosus and has had two open heart surgeries

Max Arnold, aged

four, drew this heart

picture for his sister

Zoe, who is six and had

surgery when she was a baby

Brave Carter Nicoll was 18 months old when he had heart surgery in Leeds for ASD, VSD and pulmonary stenosis

Little Zack Ledson spent 3 months at the LGI, and was flown to GOSH for the Ross procedure aged 8 weeks old

Thirty brave supporters proved their feet could handle the heat to raise money for CHSF by taking part in our fire walk at Stockeld Park. Together, they raised around £8,000 as they completed the challenge of conquering the burning hot coals...

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y al

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Scot

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Visit us @ www.chsf.org.uk 19Events

Dress for success... Wear Red Day is back!

LAST year, hundreds of schools and businesses across the region supported Save Our Surgery Ltd's fight to retain children's heart surgery at the LGI by taking part in Wear Red Day – raising more than £40,000. Next year, CHSF will be adopting Wear Red Day to raise funds for our usual charitable activities...

WeAR red this February and help ChSF to make a difference in the lives of young heart patients.

Schools, organisations and businesses across Yorkshire, humber and North Lincolnshire are encouraged to support ChSF and register to take part in Wear Red Day 2 on Friday, February 7, 2014.

We ask those taking part to make a small donation to wear red clothes to school or their place of work and raise much needed funds for ChSF.

The first Wear Red Day was held by Save Our Surgery Ltd as part of their effort to campaign against plans to end surgery at the Leeds General Infirmary. This time around, Wear Red Day 2 will raise money for ChSF,

with funds being spent on vital projects such as equipment for the heart unit and family support services

– the type of projects you read about in this magazine. And we want to make Wear Red Day 2 bigger and better than the first event, with more schools and businesses taking part.

Katie Bear will be out and about across the region on the day, so if you want to organise a Wear Red Day event and want Katie to attend,

let us know. So, why not ask your child's school, or your boss, if they will take part?

All they'll need to do to register their school or business to be involved in Wear Red Day 2 is to log onto www.chsf.org.uk/wearred and fill in the simple form.

So, get those red clothes ready. And remember – the redder, the better!

● Wear Red Day will take place on Friday, February 7● Schools and businesses across Yorkshire, Humber and North Lincs are encouraged to take part, with pupils and employees making a donation to wear red clothes● You can register your school or workplace at www.chsf.org.uk, or contact us via events@chsf.org.uk or 0113 392 5742 to find out more information

What you need to knowJoybelles

Singers

Leeds Cathedral, Sun Dec 8, 2.30pm

Christmas Carol Concert

Tickets: £5.00 adults; £3.50 children/concessions; under-2s

free. Tickets from 0113 392 3987 or events@chsf.org.uk

Featuring performances by:and Children's Choir of the Year 2012:

Next issue out in early 2014. To subscribe call 0113 392 5742. Registered charity number 1148359

ouR suPPoRteRs walk oveR hot coals FoR ouR heaRt

heRoes. what will you Do?

Donate at www.chsf.org.uk