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Summer newsletter

2016

Cerys Climbs a Mountain For Heartline 10-year-old Cerys Roberts, from Anglesey, climbed Mount Snowdon last month to raise an incredible £1,585 to thank Heartline for the support given to her cousin, Aiden, who was born with congenital heart conditions. Cerys said: “I wanted to raise money and awareness for children and their families. My cousin Aiden has congenital heart disease and has had lots of help from Heartline. He has been able to do things he wouldn’t have been able to do without the help of this charity. I’ve always wanted to help people. I got the idea for this walk when I was walking with my family looking for snow in the mountains. I enjoyed this so much, I thought it would be great to do something I enjoy and help people out at the same time.” There was a false start to Cerys’ challenge when heavy rain delayed the trek by one day, but she was soon up and climbing to complete the climb. We are very proud of Cerys and extremely grateful to her on behalf of the many families who will benefit from her fundraising work. Cerys’ mum, Sioned, said: “We were all so proud of her and also a bit worried that she had taken on such a big challenge but she was determined and was excited, and all we could do was support her and prepare her for the long walk!

Superstar Cerys reaches the peak at Snowdon

“She worked really hard on raising the funds. After school she would either walk around asking for sponsors, put her walking boots on and would go for a half hour walk, she did stretches, she wore her walking boots while playing with her friends because she knew it was important to wear her boots in. Story continues on page 7...

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Summer Fun for Wetsuit Babies!

FREE Wetsuits For Heart Children!

Children with heart conditions often can’t maintain their body temperature when swimming or playing in water, even in heated pools, but we don’t think this means they should have to miss out! Some of our mums tell us how our wetsuits have helped her children to enjoy summer again.

Heartline offers a free wetsuit for a child who is registered on our database. All applicants will be confirmed by our office before wetsuits are ordered and sent out.

Water baby Martha Grace

”You may have noticed Martha Grace wearing a red wetsuit in our Center Parcs photos. No it isn’t to hide her scar, and no it’s not a flotation device - its job is to keep Martha warm when she’s in the water. At the beginning of the year I applied for Martha Grace to have a wetsuit so that we could take her swimming when we went away, and hopefully she could play in the paddling pool in the garden in the summer. The wetsuits are provided free of charge to heart children and as they grow they can request a new one”.

To request your free wetsuit, you must be a family member of Heartline Families, which is also free and can be done by visiting the website. Once you have been accepted and processed as a member, you can order your wetsuit by completing the form on the website at www.heartline.org.uk and your child will be splashing around before you know it.

Water baby Oscar “I just wanted to send you a couple of pictures of our little boy Oscar, who has hypoplastic left heart syndrome, with his wetsuit on. It really has made an incredible difference to us and to him. He no longer goes blue in the pool and has started loving swimming as we are now able to go so often - thanks to the wetsuit!”

Tips for the best-fit wetsuit - If your child has a heart rhythm problem, check with their cardiologist before taking him or her swimming – a few types of heart rhythm problems can become dangerous when a child enters the water.

Water baby Eleana

“Thank you for Eleana’s wetsuit. This is her first holiday and first time on beach. She has had a full heart repair (five times!) on absent pulmonary valve and large VSD, she has a tracheostomy and ventilator to aid her breathing because her heart is so big it collapsed her airways/lungs. But finally she is improving and so now we are starting to enjoy life. Eleana had never been swimming or on holiday (she’s 4) because of her health and being hospitalised for most of her life. You’ve taken one worry away (getting too cold when wet due to her heart condition). Thank you!”

Water baby Bobby “We have just returned from a week’s holiday in Minehead, where Bobby got to try out his wetsuit.

It was amazing he really enjoyed the pool and his colour remained the same, no blueness at all, it kept him warm.”

Why do heart children get so cold in the water?

- Size – Try not to order too far ahead of the first intended use of the wetsuit, as your child may have a growth spurt. - Under 4, your child’s current clothes size is a good indication of the best fit for a wetsuit, unless he or she is big for his or her age. - When the wetsuit is delivered please email intouch@heartline.org.uk - If your wetsuit hasn’t arrived within three weeks of your submitting this form, please email us so that we can sort it out quickly. We would love to have pictures of children benefiting from their wetsuit to show our kind donors how much they are enjoyed!

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Heartline’s Hazel Greig-Midlane explains the benefits of wetsuits and exercise for children with heart conditions. “Many heart children have not been able to enjoy benefit from and (just as important) enjoy, even those playing or exercising in water. This is sometimes because too breathless for physical games, or on medication that their poor circulations cause them quickly to become excludes them from contact sports. cold even in heated pools. There are a variety of medical consequences of heart conditions that lead to Some children are very conscious of their scars from this lack of control of their body temperature. In CHD open heart surgery that make them different and so the heart is already working harder to maintain reluctant to remove their clothes in front of others. sufficient oxygenation and the body’s core temperature. The provision of a wetsuit gives them a freedom to The cooling effect of water increases the effort needed. participate in physical and social activities they would Often the child will feel uncomfortably cold with not otherwise have, even just having fun on the beach shivering and blueness after only a few minutes in even if not swimming or paddling in the sea. Careful exercise warm water. And sometimes parents think their child may improve their medical condition and certainly is not ‘allowed’ to play in water because of their heart assists in helping them combat infectious illnesses.” condition. Swimming is exercise heart children can


Can you help Heartline?

Our Very Own Saint Jude By Jude’s mum Clare O’Keeffe

My husband and I were attending our 20 week scan for our first child. We were obviously very excited as this was all new territory for us, as we prepared to expand our family.

the special care unit. He was actually the largest baby in there and you wouldn’t have thought he had any struggles. Jude was in special care for three weeks before he was allowed to come home.

through difficult times and create a support network for people that have not been through these things before.

During the scan the nurse said that one side of the heart

Jude really struggled to feed and in the end he was fed on a high-energy milk through a tube. Surgery was scheduled for six months time to try and build up as much strength as possible. Jude had open heart surgery, in November, to patch the holes in his heart. He left Great Ormond Street within three weeks and he seemed so much better, as the blue spells that he had been having subsided. Jude then had to have open heart surgery again at 14 months old as he had to have a pulmonary valve fitted.

While Jude’s little brother was having a hair cut, Jude asked me if he could shave his head and ask family to sponsor him. Jude raised over £800.00 for Heartline Families from our friends and family. His school had also put him forward the St Neots Rotary club award, which he won! Jude was really surprised by this, as he raising the money to help families and wasn’t expecting any recognition.

Things moved quickly

seemed enlarged and that she wanted to get a consultant to have a better look. Things then started to move very quickly and we didn’t really have any time to take everything in. That afternoon we were seen by the consultant who carried out a more detailed scan. Within (what seemed like) minutes we were walking back to our car, calling work to tell them that we had to take the next day off as we had an appointment for the following day at Great Ormond Street Children’s Hospital for our unborn child.

We were diagnosed and found out we were having a little boy at the same time

We were seen by a consultant at Great Ormond Street who diagnosed our baby with Tetralogy of Fallot with Absent Pulmonary Valve. We decided to find out the sex of our baby and found out that we were having a boy. We wanted to find a name for him early so that we could talk to him even while he was still in my tummy. We struggled with names and then agreed on the name Jude. We read that St Jude is the patron saint of lost causes, which - at that time seemed appropriate considering the circumstances.

Struggling to grow

Jude was born on the 20th May 2005, 1 week early by emergency caesarian as he was struggling to grow in the last week. Jude was born at 6lb 15oz and was placed in

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Difficulties feeding Jude

Surgery took longer than expected

This surgery was supposed to take five hours but it was nearly eight hours before surgery was finished. Within two weeks Jude was out and at home. He has continued to grow from strengthto-strength.

Jude raises over £800!

An inspiration to all of us

My husband and I couldn’t be anymore proud of him, he is an inspiration and very strong-minded and determined young boy and a great big brother to Maddie and Zak. He has come along way and last year was told he could play football, of which he was so excited to be part. I would like to thank St Neots Football Club for inviting Jude to train with the under 11s team. You’ve made a young boy very happy.

Skydiving, coffee mornings, marathons or sponsored silence. There are lots of ways you can help raise much-needed funds to support us. Please get in contact if you would like more information or if you’re planning to hold a fundraising day. Heartline Families does not charge a fee, but relies entirely on voluntary donations. We are grateful for any support you can give us. There a few different ways to donate: regular donations or a one-off contribution. How does your money help? • £7 monthly donation - could provide the guide: Heart Children: A Practical Handbook • £13 monthly donation - will pay for a wetsuit for a heart child • £25 monthly donation - will help towards the running costs of our caravans • £50 single donation - Towards our Campaign for a new caravan for Heartline Families to have a well earned holiday How can we support you with raising money? We have balloons, collections boxes and much more to help. Alternatively, you can 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 account Sort Code 30-96-96. Account Number: 59276960.

Wanted to give something back to Heartline

Jude recently asked to do something to raise some money for Heartline Families, as he has seen me reading the magazines and was interested in what you do. We have, for many years, kept up to date with the Heartline families stories, as our daughter Madison was born 18 months after Jude and she was born with Pulmonary Stenosis. We have found these stories a source of inspiration. I explained that you help families

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Helping Us To Help You Caravan Holidays Thrive!

Heartline is so lucky to have Nicola Garbutt administering the caravan holidays. As we run as a minimal, low cost organisation with a board of trustees and a freelance administrator, we rely on the support of volunteers to make time to help our families and provide them with as much help and opportunity as we can. Thank you Nicola from everyone around Heartline Families - you are a joy to work with, always cheerful and friendly. After several years of concern about whether it would be possible to keep the caravan holidays going, and knowing how valuable they were made it worse, we are now in a position to say the holidays are popular, organised and booked. Every day that can possibly be used is offered by Nicola via volunteer@heartline.co.uk and there is little time which is not already booked for this season, though there are a few days available still. We have also been supported by Anne and Hannah McKain, on behalf of Sarah’s Star Fund in memory of Sarah, Hannah’s sister. They have again donated funds to keep the caravans running, which also means we do not have sleepless night wondering if we can keep the charges low and still keep going. They have also provided a fund for toys as the new caravans were almost ‘toyless’. Sarah’s Star Fund has many fundraisers and you can see some stories about them on the website www.heartline.org.uk Nicola also asked Hasbro if they would supply some toys, which they kindly did as you can see from the photo demonstration! It is a happy, continuing story therefore, for the caravan holidays and our thanks to everyone involved including the lovely guests who always make a real effort to leave the caravans clean and in as good or better condition than when they arrived.

Denise

More about our caravans

Mablethorpe Caravan One of our caravans is on the Golden Sands Park, Mablethorpe, Lincolnshire see: Golden Sands and accommodates eight people. Our caravan is now situated near to the facilities of the park but still not far from the stunningly beautiful beach. There is loads to do for all the family whether it is swimming in one of the pools or taking part in the sports and leisure activities on offer, so there will never be a dull moment. Oakdene Caravan Our other caravan is Oakdene Forest Park, in the New Forest – see: Oakdene – and accommodates six people. The Park is set in 55 acres of beautiful parkland bordering the Avon Forest and unspoilt river meadows. Our Oakdene caravan is near to the leisure facilities including a heated indoor pool with flume and toddlers’ beach area, heated outdoor pool with toddlers’ pools and sunbathing area, table tennis and pool tables, crazy golf, fishing, club house facilities, supermarket and off-licence. There are many entertainment parks in the area. This year our caravans open on Saturday 19 March and close Saturday 29 October. Please see our website for prices and availabilty.

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Cerys Climbs a Mountain for Heartline! Cerys Roberts climbed Mount Snowdon, last month, to raise almost £1,600 for Heartline. We’re very proud of her. Her mum, Sioned, tells her story. Cerys Roberts was just nine years old when she first had the idea to do a walk for charity. The idea came to her when she was walking with her dad, John Glyn, her little brother, Sion Glyn, and I (mum), up a small mountain in March. We had been looking for snow when Cerys asked if she could do a charity walk to raise money for her cousin Aiden. Aiden had been born with a coarctation of the aorta and severe aortic valve stenosis. He is currently waiting for a repair of the dilated aortic route. I explained to Cerys that she couldn’t raise money for Aiden, but that she could raise money for a charity. She decided that this was what she wanted to do. Cerys decided to walk Snowdonia mountain, which is the highest mountain in Wales. We were all so proud of her. We were also a bit worried that she had taken on such a big challenge, but she was determined. All I could do was support her and help to prepare her for the long walk! Cerys decided to hold raffles to help raise money and was given 30 amazing raffle prizes by local shops and businesses around Anglesey. She also set up a table with information about Heartline and charity box to which Asda costumers could donate. She set up a Justgiving page and had sponsorship forms made to raise as much money as she possibly.

also very tired. We then left Cerys at 1:30pm. We travelled back by train, leaving Cerys to make the journey back on foot - she did a great job.

The walk down

Cerys found the walk down very hard but still didn’t complain. The weather had cleared and the views were amazing. As we were waiting - at around 5:30pm - we saw Cerys running towards us. We all got up to meet her and she ran the final part of her walk with a huge smile on her face! She was very proud of herself! Cerys and Aiden then released Heartline balloons at the bottom, which was very emotional to see. Cerys went home after her long day where her cousin, Antonia, had set up a party for her and she was surrounded by her proud family and friends.

Diary: The walk - 21st May

Cerys was all set to do her walk up Snowdonia with her dad, John Glyn, and members of the family, Chris and Zoe Jones, today She was very upset when we told her it had to be postponed as the weather and high winds were too dangerous.

22nd May 2016

Today, the weather was perfect and Cerys was so excited that she can finally do her walk! She woke up 5:45am as she had to leave the house for 6:30am. Cerys started her walk up Snowdonia at 8am. It was a big challenge for her. It was raining on and off all morning but her dad said she didn’t complain and just did it! Cerys wore her Heartline t-shirt and a few people even stopped her to donate! She reached the summit around 12pm and we met with her. We were all so proud. She looked very happy and

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B&Q Does it For Heartline! DIY heroes B&Q, Watford, raised £350 for Heartline Families over the Easter weekend. Saira is the store Charities Champion and works voluntarily to support good causes. Usually B&Q chooses big-name charities to champion, but were keen to help when we approached them to help support a smaller charity. Easter is a busy time for DIY stores, and some of their biggest customers are families buying for their home, so Saira decided to make an all-out effort. Wednesday is discount day for over 60s, so she set up a coffee and cake stall that day, decorated with our heart balloons, which was very popular with staff and customers alike. Staff rallied round and donated a huge number of gifts for a Tombola, held over the Easter weekend. They also dressed as Easter bunnies and organised an egg hunt for children. Every till had a donation box and at the exit they set up a (new) WC pan and invited customers to ‘spend a penny’, which especially amused the younger customers. We are very grateful to Saira and all the team at B&Q Watford for their support. Thank you!

Join us! Do you have a child with a heart condition? Do you know someone who could benefit from our support? We can offer you support and a chance to share your fears, concerns and hard won knowledge with other families.

Heartline Back Online! Our new-look website, www.heartline.org.uk has finally been launched! We have updated the look and feel, navigation around the site and, most importantly, the Heartline Forum has been re-launched. Our website is key to the work we do here and amongst the improvements, Heartline Families can now: - Join the forum (with a unique login only available to Heartline members)- to share stories, seek informal advice and be part of the Heartline Families community made up of families and friends with heart children. - See the Heart of Stars - our special remembrance page for Heart Children who we have so sadly lost - Apply for wetsuits for Heart Children - Find out about and apply for Activity breaks and caravan holidays - Find out about all the fundraising efforts that Heartline friends and families are undertaking to raise funds for Heartline - Hear about the latest activities of the Trustees and Volunteers and explore how you can get involved - Donate to Heartline As ever, Heartline is a small Charity and, as such, the trustees, volunteers and fundraisers do many things themselves to keep the community connected and provide our services to existing and new Heartline Families. As such, our website and Forum is still evolving as we listen to your feedback and we very much welcome your thoughts and suggestions.

Share Your Story Do you have a story or experience that you’d like to share with our families? Or perhaps an idea for something you’d like to see featured in the next edition of Heartline Families Magazine? Please do get in contact and let us know - we’d love to hear from you! Email trustee1@heartline.org.uk

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, - 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. 8

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Here Comes Summer! Sunscreen, wetsuit, medicines, insurance - it’s holiday time! •

Choosing your destination

Choosing the right destination for your holiday is really important. Factors you may need to consider include:

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temperature – will your child cope with very hot or cold weather?

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transport – will your child cope with long journeys, have problems with flying and so on?

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distance from hospital or heart unit. Is it important that your child can receive medical attention quickly?

Choosing your accommodation

Choosing the right accommodation may also be important. If your child gets tired easily or has problems walking, you will probably want accommodation that is near to any facilities you are planning to use. If you are taking medicines or INR strips with you that you need to keep cool, make sure your accommodation has a fridge.

Information from your doctor and consultant

If you have any concerns about taking your child on holiday, contact your cardiac liaison nurse or cardiologist for advice. Your insurance company may ask for a letter from your GP or cardiologist to confirm that your child is fit to travel. This letter might need to confirm that:

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your child’s health will not be put at risk by visiting your destination;

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your child is fit to fly; and

your child’s heart condition is stable. You might also want to ask your cardiologist for a letter explaining your child’s condition which you could show to any doctor you had to consult while you were away. If you are going to a non English-speaking country, you may want to learn how to say that your child has a heart condition in the local language. You could also write these words down and keep a note with you.

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Your cardiologist should be able to tell you where your nearest paediatric cardiac centre will be. You may want to take the address and contact details of this centre with you. It is always a good idea to have the contact details for your GP and cardiologist with you in case you need to get in touch urgently.

Medicines

Your GP can advise you about any prescribed medicines you need to take with you as well as any extra health precautions or vaccinations. Take plenty of all essential medications with you. If you are unfamiliar with local medicines, you might want to take things like rehydration sachets and children’s paracetamol as well.

Insurance

For most conditions you should have no problem in getting insurance cover for your child. Shop around to find the best deal and check carefully to see exactly what your insurance covers. Do not be afraid to ask lots of questions, especially ‘What if…’ questions. Most policies have a 24-hour emergency phone number. Take a copy of the policy with you and a note of the emergency phone number. E111 forms have now been replaced by European Health Insurance Cards (EHIC). You should have one of these to receive any healthcare needed when visiting a European Economic Area (EEA) country or Switzerland. You can apply for an EHIC on-line at www.ehic.org.uk or www.dh.gov. uk/travellers, by phone on 0845 606 2030 or at post offices. Remember this is not a replacement for health insurance.

List of travel insurance providers

The insurer may ask you to speak to the medical screening line. Be prepared to answer questions on your destination, how long you will be away, your child’s date of birth, the name of their heart condition and how stable the condition is.

Are you planning to take your heart child on holiday? Here our everpopular guide gives practical tips and key advice in helping ensure it’s a happy experience for all.

Stability is a major question for insurers. To check how stable your child’s condition is, you may be asked questions such as: what medication your child is on; the dosage;

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whether the dosage has recently changed;

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dates of admissions to hospital;

and dates when you have had to go to A and E. You may also need to describe what symptoms your child experiences.

Packing before a flight

There are strict rules about what you can take in your hand baggage on flights. These rules can vary according to the security situation at the time you fly and which airline you choose. If you are in any doubt, the best advice is to contact the airline beforehand and ask. Solid medicines like powders or tablets should be allowed in the cabin but make sure everything stays in its original packaging. Liquid medicine in quantities of less than 100ml are usually fine although you should bring them to the airport in a single, transparent, resealable plastic bag (about the size of a small freezer bag). You must present the bag separately for examination at the airport security point. Essential medical equipment should also be fine if you have supporting documents from your cardiologist or GP. It will need to fit into your one item of hand baggage. If you are travelling with an INR (blood monitoring) machine, carry the monitor and the strips in your hand luggage. The temperature in the baggage compartment of the aircraft can fall below freezing, which may affect how the strips work.

airline about this and any extra costs involved before you book your flights. Different airlines have different rules about the supply of oxygen so find out exactly what they can provide and check that this includes masks or nasal cannulas for delivering oxygen. The airline will probably need information from your consultant outlining your child’s oxygen needs. Make sure that either you or one of the flight attendants knows how to turn the oxygen on and how to change cylinders or bottles. Most of the policies for travelling with oxygen by air also apply to travelling by sea. Contact the customer services department of the line you are sailing with for information.

Additional tips

If you are travelling by road, there may be restrictions about travelling with oxygen in some types of vehicles, on some roads. Your vehicle insurance company should know what these are. Pacemaker card - these may be needed at airports, and INR record if not kept on your phone. Ensure insurance covers someone staying with the child if they are ill over the period of returning home – can be bankrupting expensive to pay for hotel and accommodation and flights back. We hope you have a fantastic holiday!

Oxygen when travelling

If your child needs, or may need, oxygen while flying, make sure you talk to the

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Keep in Touch

Do we have your most up-to-date contact details? Please complete the form on the website to update us, or email intouch@heartline.org.uk or contact us by using the details below.

Heart Children Book A practical handbook for parents‌

For the past 30 years the Heart Children book has guided parents and families through the heart condition that children may be born with or acquire, the treatments available, and how to deal with the many medical and social problems that they may have to face.

How to get your copy

Single copies are free to Heartline Families. Single copies ÂŁ7.50 (plus P&P). Send a cheque made payable to: HeartLine Families, or BACS receipt for payment to: Heartline Lloyds - sort code 30-96-96, a/c 59276960, with delivery address to 3 Platanus Mews, 14a Church Street, Epsom Surrey KT17 4QB

The Heart of Stars

The Heart of Stars is where we dedicate a star to remember our children. Bereaved parents just have to let us know, and a star will shine for their child. Please contact intouch@heartline.org.uk for more information or visit the website.

www.heartline.org.uk Telephone: 033 00 22 44 66 Email: intouch@heartline.org.uk Facebook: www.facebook.com/heartlineuk www.twitter.com/heartlineuk

Tell Your Story

Heartline Families is edited by Natalie Persoglio. Please send articles, photos and feature ideas by email to trustee1@heartline.org.uk

Heartline Families is a Charitable Incorporated Organisation. Registered Charity Commission No: 1153442

Profile for Heartline Families

Summer 2016  

Real life stories and news from the heart world.

Summer 2016  

Real life stories and news from the heart world.

Profile for heartline
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