heartline families spring 2015 newsletter

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Spring newsletter 2015 www.facebook.com/heartlineUK www.twitter.com/heartlineUK Here Comes Summer! We offer a free wetsuit for heart children who are registered on the Heartline database. All applicants are checked by the Office before wetsuits are ordered and sent out. See more on the website or Facebook about how to apply for your free wetsuit or call 033 00 22 44 66. Like & Follow us at Facebook Members’ Group Now Open We now have a closed group for Heartline Families on Facebook. We will use this page to share informaon about being a member and how to obtain member benefits: such as the caravan holidays that we offer to families, free wetsuits and other informaon about your heart child’s care. You can also use it to ask other families quesons about health, feeding, condions, hospitals and all aspects of the heart world in a closed and confidenal environment. We will send the link to your when your membership has been confirmed and processed. Please do say ‘hello’ and introduce yourself! Latest Update on the Heartline Families 2015 Caravan Appeal Our drive to raise funds for a much-needed replacement caravan, at Oakdene, for our Heartline Families to take well- deserved holidays from 2016 is almost there! At the end of January 2015, we had raised £8,000 pounds towards the £30,000 needed, achieving 26% of our target already. In February, we received a grant of £10,000 to add to this from the Clothworkers’ Company. We have made and succeeded with several other grant applicaons, and are making more and we have had wonderful support from the Walker family through the Theo Walker Fund. We are now able to start the fund for the Mablethorpe caravan replacement and we will be vising Mablethorpe at the end of April to look at a possible replacement. Families are starng to raise funds by holding fun runs, coffee mornings and raffles and we appeal to you to join in and get us moving on the Mablethorpe fund. Many grant funders want to see acvity related funding contribung to the running costs of the caravans and general funding. So, take a look at the Just Giving page www.justgiving.com/heartline and join in the fundraising or ask your children’s schools to support us with a fundraising day or take part in a sponsored marathon or sponsored silence. Whatever takes your fancy! Let us know what you are doing and any help you need, via the website or [email protected] or just click on the Donate buon at www.heartline.org.uk to contribute whatever you can afford as it all helps us keep up our caravan holidays.

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Packed full of real life stories, advice and news about the heart world.

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Page 1: Heartline Families Spring 2015 Newsletter

Spring newsletter 2015

www.facebook.com/heartlineUKwww.twitter.com/heartlineUK

Here Comes Summer!We offer a free wetsuit for heart children who are registered on the Heartline database. All applicants are checked by the Office before wetsuits are ordered and sent out. See more on the website or Facebook about how to apply for your free wetsuit or call 033 00 22 44 66.

Like & Follow us at

Facebook Members’ Group Now Open We now have a closed group for Heartline Families on Facebook. We will use this page to share information about being a member and how to obtain member benefits: such as the caravan holidays that we offer to families, free wetsuits and other information about your heart child’s care. You can also use it to ask other families questions about health, feeding, conditions, hospitals and all aspects of the heart world in a closed and confidential environment. We will send the link to your when your membership has been confirmed and processed. Please do say ‘hello’ and introduce yourself!

Latest Update on the Heartline Families 2015 Caravan Appeal

Our drive to raise funds for a much-needed replacement caravan, at Oakdene, for our Heartline Families to take well-deserved holidays from 2016 is almost there!At the end of January 2015, we had raised £8,000 pounds towards the £30,000 needed, achieving 26% of our target already. In February, we received a grant of £10,000 to add to this from the Clothworkers’ Company. We have made and succeeded with several other grant applications, and are making more and we have had wonderful support from the Walker family through the Theo Walker Fund. We are now able to start the fund for the Mablethorpe caravan replacement and we will be visiting Mablethorpe at the end of April to look at a possible replacement. Families are starting to raise funds by holding fun runs, coffee mornings and raffles and we appeal to you to join in and get us moving on the Mablethorpe fund. Many grant funders want to see activity related funding contributing to the running costs of the caravans and general funding. So, take a look at the Just Giving page www.justgiving.com/heartline and join in the fundraising or ask your children’s schools to support us with a fundraising day or take part in a sponsored marathon or sponsored silence. Whatever takes your fancy!Let us know what you are doing and any help you need, via the website or [email protected] or just click on the Donate button at www.heartline.org.uk to contribute whatever you can afford as it all helps us keep up our caravan holidays.

Page 2: Heartline Families Spring 2015 Newsletter

A Dad’s Story

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Noah. By Lee FreemanMy son, Noah Freeman, was born on the 31st March 2013 at 5:37am weighing 6 pounds 11 ounces.He was born with a rare congenital heart defect called tricuspid atresia hypoplastic right heart with VSD.We found out he had his heart condition at a 20 week scan at Worcester hospital.

Something wrong at the 20 weeks’ scanWhen they checked his heart chambers and noticed something wasn’t right, the sonographer brought more people in to check and, at this point, we started to worry. They wouldn’t tell us anything, they just informed us a consultant was on the way. When the consultant arrived she said something was wrong with the baby’s heart chambers, but she couldn’t tell us exactly. She suggested that it was sometimes related to Downs Syndrome and, if we wanted to, they would sort out a termination. My wife and I both agreed - this was our child and we loved him no matter what. So the consultant arranged for her to have a scan at the Birmingham’s Woman’s Hospital. Two terrifying weeksWe had to wait two terrifying weeks wondering what was going to happen and if we would ever hold our little angel. We eventually had the scan and the consultant explained that Noah had only half a heart, as well as a hole in it and that he would require a lot of surgery throughout his life. They said they could give him a good life if we wanted to proceed. If not, he could make arrangements for

termination, or they could let him be born, not treat him and let him go peacefully. Again, we said we would do everything we could for him and the consultant was relieved to hear it. Throughout the pregnancy there were scans every two weeks from Birmingham Women’s Hospital and Worcester Hospital. Birmingham Hospital took charge of the pregnancy and Worcester hospital just wanted to be kept informed. Noah arrives earlier than plannedAfter having a routine scan at the Women’s Hospital, we were told that Noah had stopped growing and they were arranging an induction to bring him into the world a few days early. Admittedly I was in complete shock, so they agreed to carry out the induction the next day instead, so I could digest the information. On the 31st March at 5:37am Noah was born. It happened so quickly. Sarah had two midwives caring for but, once they pressed the emergency button, the room filled with 11 medics. Heart rate drops Noah’s heart rate started to drop so they had to use suction to try and get him out.He was born and we managed to hold him only for a few minutes before he was taken off us. They said he needed urgent medical treatment and, as soon as they were ready, we would be able to see him again. A nurse came into my wife’s was getting cleaned up and said the worst had happened and that Noah had to be ventilated.

My wife went back to the ward and I had to leave. We finally saw our son eight hours later. 3

Noah was on a ventilator and incubator. He had a lot of wires and machines coming out of him. We were told that they couldn’t tell us anything, but he was doing well and awaiting transport to the children’s hospital. After three days at the Women’s Hospital we were transferred to the children’s hospital where Noah was taken to Ward 11 High Dependency Unit. The consultants carried out scans. They told us that he wasn’t doing well at all and would need surgery as soon as possible. A difficult surgeryThat night he was admitted to intensive care as his oxygen levels dropped. Two days later, he had an operation to put a band around his lungs to protect them from the blood flow, and also a septostomy to stop back flow of the blood going round the body. After his surgery it didn’t look good, his kidneys failed and he developed a blood clot on the brain causing seizures and brain damage. Home with our angel After a couple of months in hospital, he was released and on a lot of medication as well as being fed from a nasogastric tube. We finally had our angel home, but after a couple of weeks we woke up one night and he was struggling to breathe and was very sweaty. We rushed him to hospital, where we were told we had made it just in time. He had 13 medical staff working on him. They told us they were doing everything they could. Birmingham Children’s Critical Care team came and collected him and took us back up to Birmingham Children’s intensive care unit where he spent a few weeks. With a lot of ups and downs we are now awaiting his next stage of surgery, which is called the Fontan procedure.Being a dad and a husband As a husband, you want to be the strong one for your wife and you’re always told you have to support your family. But sometimes you just feel like saying “what about me? Who’s going to support me?” You want to be the rock and always stay positive. You always try to be those things even though deep down, sometimes, you just want to hide and break down. Worry about the bills and workYou also worry about the bills and work whilst you’re away. You can’t help but think “what are we going to do? The bills are racking up and the income is going down. Are we even going to have a home to go too? If so how long for?” I was lucky my employer was very helpful and our family helped support us too. Sick with nervesWe’re waiting to go back for more surgery and every day I feel sick with nerves. I wish we could just run away and bury our heads in the sand rather than go through all

that again; the feeling of the unknown every day. The staff at the hospital are and were always amazing. They made sure you went and ate and rested and would call you if anything changed. Which helped a lot.As a family we try and take every day as it comes. We’ve learned to not plan anything, as sometimes Noah likes to throw in a few surprises. He has a nasogastric tube, which he has machine pumped feeds through during the night. We also have saturation monitors and oxygen canisters, which we use on occasions when he’s not doing very well. Noah has to stay wrapped up warm all of the time as his body cannot retain heat due to poor circulation. He cannot walk very far and is breathless a lot of the time so we always try and do activities that

won’t involve running around. Make every day count We know that eventually he may need a heart transplant and other open heart surgeries. All we can do is be honest with him and make every day count. There will be some tough times ahead, as we know all he will want to do is go and play and keep up with the other children, but his condition won’t always allow it. But we will make the best out of everything we can. Wish I could take away Noah’s painNoah, Riley and my wife, Sarah, are my everything and I would do anything for them. I just wish I could take all of Noah’s pain away and make it so he never has to undergo the surgery. We have the opportunity to send Noah to either state school or a school for children with disabilities. We’ve decided

that we would like him to go to a state school to try and give him as much of a normal life as possible and the liaison staff at the hospital have said they are happy to help and talk to the staff at the school and help educate them. Noah also has pulmonary stenosis of the airway due to scarring from the ventilator and also frontal lobe infarction, which is the brain damage caused by thesurgery. My family is my world, my everything. Terms Used: Tricuspid Atresia - the tricuspid valve between the right atrium and right ventricle is blocked or missing. Hypoplastic Right Heart - the right side of the heart hasn’t developed properly. Ventricular Septal Defect (VSD) - A whole in the wall of the septum that separates the left and right ventricles. Septostomy - a hole created in the septum.Nasogastric (NG) - a tube to feed from nose to stomach.Fontan Procedure - The last of a series of operations to separate red and blue blood flows, allowing the blue blood to flow directly to the lungs, while the red is pumped from both ventricles Saturation Monitor - monitors the oxygen levels in the blood.

Being a heart dad carries its own difficulties, whether working to keep household fi-nances flowing during difficult times and caring for siblings when his heart child is in hospital, to remaining strong and resilient for the whole family. Never forget the role of the heart dad. Here, we have two stories...

Page 3: Heartline Families Spring 2015 Newsletter

Mason. By Dave Williamson In January 2013, my partner and I were over the moon to find out we were expecting our first child, so did the usual first baby thing and told everybody straight away. We had the usual scans and midwife appointments - everything was going smoothly. I booked the time off work to make sure I was at every appointment. Then along came the 20 week scan. We couldn’t wait to find out if we were going to be buying blue or pink for our new baby. The scan was going well and we were told we were going to have a little boy. Something wasn’t rightThe sonographer’s face changed and I knew something wasn’t right. She told us that everything was fine but, because she was fairly new, she was going to ask a colleague to come and take a look. Another lady came in and repeated the scan and checks. She asked us to wait in the family room for a consultant to come and speak with us. It was at this point that my partner clicked that something just wasn’t right. “I think there’s something wrong with your baby’s heart.”It was frightening to be just sat there not knowing anything. Then consultant came in with the nurse and sat. He just said “I think there’s something wrong with your baby’s heart and I want to send you to Leeds for a foetal heart scan.” We asked what was wrong but he wouldn’t tell us anymore. We left and five minute later got a phone call from Leeds to say we had an appointment for the next day - our minds were all over the place. We didn’t sleep at all the night before our trip to Leeds. Hypoplastic Left Heart SyndromeThe following day we had our scan and were sent into another family room while the consultant looked at the results of the scan. The consultant told us: ” I’m afraid your son has a heart defect called hypoplastic left heart syndrome”. The doctor and nurse were great, they explained it all, drew pictures to show us our son’s heart, and gave us leaflets with information. Doctor explained our son’s life expectancy would be limited with no idea how long he would live, but that there was procedures to try to prolong his life. The choice of lifeSo the options were to terminate or surgery. My partner and I didn’t even have to think about it; we wanted to give our baby every chance. The doctor then told us there was a strong chance our son might not survive until birth, but we had to give him the chance. The next few weeks went by so slowly. We had weekly scans and, at every appointment, the medics kept saying “you can still terminate”, which was upsetting.I would just sit downstairs and cryI couldn’t show my partner how the pregnancy was affecting me because I had to be strong for her. Every time she went to bed, I would just sit downstairs and cry. I got to the point where I was planning my son’s funeral

in my head and he wasn’t even born yet. My work didn’t understand and, with all my time off, my boss even turned round one day and said “Why don’t you just terminate?” In the end I quit because they told me I could only have two weeks off once my son was born and I knew I would need a lot longer with his surgeries. Mason Reece Williamson is bornAt 39 weeks, my partner was induced at Leeds on 23rd of September 2013 and, our son, Mason Reece Williamson was born on 25th at 3:49 am. He was whisked straight to neonatal and given drugs to keep his duct open and had to be nil by mouth. Over next few days, we didn’t leave his side. We were so pleased that he was doing it without oxygen. He had scans every day. Leeds were working with Birmingham, as we still didn’t know if Birmingham were going to operate yet because of my son’s severe tricuspid valve leak. Rushed back to NeonatalWe popped out to get something to eat when we got a phone call saying we needed to come back to neonatal urgently as a helicopter team were ready and waiting to take Mason to Birmingham. No-one had told us, as they should’ve done, and we had to rush around packing and trying to organise travel to Birmingham. We arrived at Birmingham at 11pm and were taken to the PICU unit, where we stayed next day.Scared to bondMason’s surgeon came around to tell us he was prepared to operate the next day if we wished, but that the risk was 50/50 he would make it through the operation. Next morning we were told we could hold him for the first time. I let my partner cuddle him and I used the excuse that she needed to bond with him. The real reason was that I was scared to bond with him in case the worst happened. He was taken down to surgery; the wait was unbearable. Nine hours later, we were told he was out of surgery and that the Norwood Procedure had gone well. Seeing him with his chest open, all the wires, and being on the ventilator was hard. I wasn’t prepared for it and that’s when I broke down for the first time in front of my partner and it made me feel like I was a weak person. A rollercoasterThe next few weeks were up and down; a proper rollercoaster. After five weeks, Mason was well enough to go onto the ward and, at seven weeks, we were allowed to take him home. He was NG fed and, so, we were taught to pass a tube and to understand his medication. We wouldn’t let anyone else have him or look after him! In January 2014, he had his second operation - the Glenn Shunt. This time around it went so smoothly and we were home after just two weeks. Where we are nowMason’s now been NG tube-free for four months. He’s under physio because his development is a little delayed and he’s also under speech and language therapy.

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He’s our little miracle and heart warrior; he’s such a happy little boy. They have found a blockage in his arch now so we have got an MRI scan to see what’s what. Mason still needs his Fontan Procedure, we just don’t know when. All-in-all, every day with my son is precious to me. We take it day-by-day and are thankful for every day that we get together.Terms Used: Hypoplastic left heart - the left side of the heart doesn’t develop properly. Duct (Ductus arteriosus) – a blood vessel part of the foetal circulation, carrying blood from the pulmonary artery to the aorta. Should close shortly after birth.Norwood Procedure -a series of surgery allowing the right side of the heart to take over the work of theunderdeveloped left side.PICU - Paediatric Intensive Care UnitFontan Procedure - The last of a series of operations toseparate red and blue blood flows, allowing the blueblood to flow directly to the lungs, while the red ispumped from both ventricles.

For Mums, For Dads, For EveryoneThe support and benefits we offer here, at Heartline Families, isn’t just for mums - it’s for dads, grandparents, siblings - anyone who needs it. We are here to offer help and advice when it’s most needed regardless of who you are or how you are related to your heart child. We have a closed and private Facebook group for members to have personal discussions, so don’t ever feel you are on your own. From discussions around feeding difficulties and holiday insurance to support around the time of surgery and procedures - we are here for you.

Membership is free, so if you know of anyone who could benefit, please point them at our website: www.heartline.org.uk/joining-us.

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A Dad’s Story... continued

Help us from home or at an event with Heartline

collection boxes With your help collection boxes can raise us a lot of valuable income. Small amounts from many collectors add up to a lot.

We can send you a collection box to keep on the side in your house and whenever you have a few coins you can spare just pop them in the box. You will be surprised how it accumulates and when you have a full box then break it open and pay into your own bank and send us a cheque or bank transfer to: Heartline Families, Lloyds Bank, Sort Code 30-96-96, Account Number 59276960 for the amount you have saved up. Clearly mark the transfer or cheque with your name and “Coll Box Donation”. Contact [email protected] and we will send you a Giftaid form at the same time.

We can send you collection boxes for your fundraising event or to place on an agreed site. We need to record where the sealed boxes are placed and to follow a simple procedure to oversee the collection and banking of the proceeds, issuing a receipt and thank you to the siteholder as required. Please contact our Trustee Treasurer at [email protected] and we will arrange for sealed and numbered boxes to be sent to you and to register the necessary details on our records. This is straightforward to do and our Treasurer will follow up at an agreed or appropriate time.

Page 4: Heartline Families Spring 2015 Newsletter

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Don’t Wait For Wear Red Day to Support Heart ChildrenEvery day is an opportunity to help heart children, so please don’t wait to help support them. If you prefer to donate online, please see Heartline pages on Virginmoneygiving.com, or justgiving.com or ask for sponsorship forms from Heartline.You can also make a donation directly by using the buttons on the Heartline Families website or send a cheque.Pay directly into the Heartline Lloyds bank account. Sort Code 30-96-96. Account Number: 59276960. As always, thank you for your support.

Online Giving

The Heroes of Wear Red Day!Last February saw the Wear Red celebration day to help raise much-needed awareness (and funds!) for children with congenital heart defects. As usual, the heart community got stuck in and did us proud! Check out these photos of them ‘doing their bit’ for the heart children. Here are just a few of our true heroes of Wear Red Day!

Page 5: Heartline Families Spring 2015 Newsletter

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MedicAlert Bracelet DiscountIn the event that your child needs emergency treatment, the MedicAlert emblem is engraved with your child’s medical conditions, personal identification number and MedicAlert’s 24 hour emergency number.

Heartline is now an official partner of Medic Alert and can offer a discount on a first bracelet of £19.95.

This discount is for members only and can be obtained by contacting [email protected] (please put MEDICALERT in the subject line).

When Heartline Families’ mum, Pamela Marsh, lost her precious daughter, she was deeply touched when a close family friend decided to raise money in honour of her Jessica many years later. Heartline Families’ Pamela Marsh says: “Our darling daughter Jessica was the third of four children and she was born in June 1986. At a few weeks old she was diagnosed with pulmonary and tricuspid atresia, dextrocardia and a patent ductus arteriosus. She was a happy child, enjoyed life to the full and coped amazingly with medical interventions.My friend’s children are very close to mine in age and Jess was particularly fond of ‘baby Jack’ as he was known back then. Jack was two years younger than Jess and they remained good friends as they grew up together. Jessica had two shunt operations at three months and four years of age. When she was nine years old, in 1995, it was decided that she needed more complex surgery at Guys Hospital. Sadly Jess didn’t survive the operation but, though he was only small at the time, Jack kept a place for her in his heart and we were touched when he chose do the Movember challenge for charity in her memory as an adult. He raised £225 for Heartline Families.Bless you Jack. Your mad facial hair will, I’m sure, help to support other heart children”.

Movember Challenge!

Terms used in Movember Challenge story on page 9... Pulmonary Atresia a complete blockage between the right ventricle and the pulmonary artery. Dextrocardia the heart is situated on the right side of the body.

Patent Ductus arteriosus (PDA)a blood vessel part of the foetal circulation, carrying blood from the pulmonary artery to the aorta. Should close shortly after birth. For a full list of difficult-to-understand words translated into easy-to-understand explanations, please see the list of terms in Heart Children: a practical handbook for parents, free to registered families, or http://www.heartline.org.uk/termsused

Heartline Seeks

Trustees. Can you help?

We are looking for a Chair of our Board of Trustees and trustees to help drive the charity forward to help as many families as possible. If you know of a friend or colleague who has the interest and skills to take up this role, please ask them to contact us. The Chair will have responsibility for the governance of Heartline. He or she will have some knowledge of children’s health and social services, and the ability to channel trustees’ specialist knowledge to support awareness and fundraising. The Chair will build our profile, and work towards separating executive and administrative tasks from the trustees’ management roles, allowing more tasks to move to volunteers. We expect our Chair to take a lead in representing the issues affecting families to voluntary and government bodies. Trustees Needed!Our current Board has a Chair and three trustees. Although we represent a range of expertise (and have been very willing to learn along the way!) we need others, both to add to our fund of experience, and to bring their own area of expertise. We urgently need a Trustee who will plan and organise fundraising, both strategically and encouraging and capturing the work of our many volunteers. We also need a trustee who has regional contacts, perhaps with business or public service, so that we can better represent our families throughout UK. We are also hoping to find trustees who can bring energy and goodwill to bear on the work we need to do – maintaining websites, advising on translation, benefits, education, transition – for more information please contact [email protected].

Welcome to new trustee Val! The trustees are pleased to welcome longtime Heartline Families’ Val Thubbron as a new trustee for the organisation. Val has been a member for a number of years and will be helping to support our community and drive us forward. We will introduce Val in the next edition of the newsletter.

Page 6: Heartline Families Spring 2015 Newsletter

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Join us!Do you have a child with a heart condition?

We can offer you support and a chance to share your fears, concerns and hard won knowledge with other families.

We can provide:- wetsuits, - an activity break for siblings - as well as one for heart children, - discounted holidays on caravan parks, - a free copy of Heart Children book, - discounted MedicAlert bracelets, - children’s colouring books, dental leaflet and much more.

For information about how to join (it’s free) see our website at www.heartline.org.uk and complete the online form.

Children's Heart Disease Week @Your Stories We asked you to share your stories in a sentence, as part of Children’s Heart Disease Week 2015. Here are a few we picked from the huge number of moving experiences you shared with us. “My son, Triston, has pulmonary atresia with a ventricular septal defect; he’s had three open heart surgeries so far and needs a heart transplant when he’s bit older, he’s on daily warfarin and I do his bloods at home.” Becky Louise “My little boy, Mason is 20 month, he was diagnosed with; Pulmonary Atresia, Transposition of the Great Arteries, large VSD, Right Aortic Arch and Mesocardia. He’s had three open heart surgeries, diaphragm placation and a tracheotomy. He has had BT shunt at 13 days old and at one year old he had Glenn/Rastelli/Hemi Mustard, after the operation failed he had a arrest and stroke and had his Glenn refashioned. He’s a amazing little boy, so incredible makes me proud.” Sam Symon

“Livvy has pulmonary and tricuspid atresia. She’s had two open heart surgeries and is awaiting Fontan.” Sophie Mcquoid

“Millie has never stopped fighting for every heart beat, she has tetralogy of fallot and this year had her second open heart surgery, but nothing ever stops her. She joins all clubs at school, she looks after her disabled brother, and she will always make an effort when it comes to raising money for heart families.” Lindsey Betteridge

“My two year old daughter was born with undiagnosed Transposition of the Great Arteries ( TGA ) nearly died a couple of hours after birth. She had a balloon septostomy at 3 days old and an 8 hour open heart surgery at 5 days old to perform an arterial switch. All done at the wonderful Southampton general hospital. She’s doing well but will have yearly check ups for the rest of her life.” Faye Dutton

“My son, Adam, has Truncus Arteriosus and vsd. Repair at 3 weeks and 5 days. Suffers Junctional Ectopic Tachycardia and atrial flut-ter. Had four cardioversions. Home after 33 days, for 36hrs and suffered a total respira-tory collapse. Will require several more surgeries as his heart grows.” Sara Worker

Thanks to James Denny and Claire McAuley, for the Walk in the Light Concert at Christ the King Church, Reading with Christ the King School, which raised over £716! The event was inspired by heart child Louis, as Claire, his Mum, says: “We wanted to produce this event to thank the heart community for all their support and to raise awareness of CHDs as it’s not something we knew about until it affected us. My son, Louis, was born at 12:24 on the 4th of July, 2012 at John Radcliffe Hospital in Oxford. He came out pink and screaming, with no idea of the stir he’d already caused – nor the fact that our lives had been turned upside down! At the 20 weeks scan, it was discovered that Louis had: Transposition of the Great Arteries (TGA), Double Inlet Left Ventricle (DILV), Small Right Ventricle, Ventricular Septal Defect (VSD) and a back-to-front heart. This is a complex set of conditions which means that Louis needs to have open heart surgery several times and will need a heart transplant in time. Despite the difficulties, Louis is handling life pretty well. He’s walking, although not as far as his peers as he tires easily. He’s starting to talk and is a happy child who loves Peppa Pig and anything with wheels (but especially trains and fire engines!)”

Walk In The Light Concert Raises the Roof

(and Funds) for Heartline

Walk in the Light 2015 - The Band

Walk in the Light Concert with James Denny. Photos thanks to Marianne James

Keep in TouchDo we have your most up-to-date contact details? Please send any name, address, email address, phone number or personal details changes to [email protected] or contact us at our address below.

Tell Your StoryHeartline Families is edited by Natalie Persoglio.

Please send articles, photos and feature ideas by email to [email protected]

Heartline Families32 Little HeathLondon, SE7 8HU

www.heartline.org.uk Telephone: 033 00 22 44 66Email: [email protected]: www.facebook.com/heartlineukwww.twitter.com/heartlineuk

Heartline magazines are also available on our website

www.heartline.org.uk

Heartline Families is a Charitable Incorporated Organisation.

Registered Charity Commission No: 1153442

Page 7: Heartline Families Spring 2015 Newsletter

Top 10 Help Heartline TipsHeartline Families relies on fundraising by its members to allow us to provide practical and emotional support to our families.

Wetsuits, subsidised holidays and get-togethers are all made possible by the hard work that our members put into raising much needed funds.

Could you help in some way? No matter how small or large, we appreciate your support. If you think you can help raise funds, please get in contact with the office [email protected] and find out how we can support you with balloons, stickers, raffle prizes and collection buckets.

Here are just a few ideas to get you thinking about how you can help.

1. Ask your workplace to choose Heartline Families as their supported charity for the year. 2. Take part in a sponsored silence (good one for the kids!), run a marathon or do a bungee jump! 3. Ask your child’s nursery / school to support us – nurseries often have fundraising open days and choose a new charity each year. 4. Why not auction off your talents for the day or donate a percentage of funds raised through an eBay auction? 5. Double the money you raise fundraising by asking local businesses to support your cause! Contact the office if you need a supporting letter. 6. Payroll giving. Simply set up a direct debit for £1, £2, £5, etc, per month and donate tax-free. This method means for every £1 you give, the actual cost to you is 80p.

7. Ask your local supermarket to run bucket collections or, if you have some willing volunteers, set up a bag-packing fundraiser.

8. Set up a swear box at work, the gym or even home! 9. Do you run a shop or business? Could you spare space for one of our collection boxes? 10. Sponsored pub crawl – charge each reveller £10 and run bucket collections on your travels.

If you prefer to give online, please see Heartline pages on Virginmoneygiving.com, or justgiving.com or get sponsorship forms from Heartline.

Make a donation direct – use the buttons on the Heartline Families website or send a cheque.

Pay directly into the Heartline Lloyds bank accountSort Code 30-96-96.Account Number: 59276960.

Online Giving

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