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No 4 2012

News Now free to HeartLine members! Heart Children —a practical handbook for parents and a useful guide for those caring for children with heart conditions and their families. How to contact HeartLine: ♦ There is an addressed envelope with this newsletter, or ♦ write to HeartLine Office 32 Little Heath London SE7 8HU. or ♦ email admin@heartline.org.uk or ♦ call 033 00 22 44 66 Thanks to all those who have and are raising funds for HeartLine. We are translating these into benefits for members as fast as we can: see inside for subsidised caravan holidays, discount on MedicAlert, wetsuits, PGL short breaks for children, summer party, booklets … In this Newsletter ♦Our first Silver Bond London Marathon runner: raise sponsorship for the wonderful Emilly ♦Have your say about how HeartLine should be run—we need more parents to come forward as Trustees, and we would welcome the input of members at the AGM use the form on page 7. We want to be an organisation for parents and run by parents. ♦Book for PGL short breaks on page 8 for heart children and brothers and their brothers and sisters ♦Summer Party - send for your invitation on page 8 ♦Wetsuits—details for getting your child in the swim page 6

New leaflet and poster If you are getting this newsletter through the post you may have the new poster and leaflet for offering HeartLine support to new families. We have a lot to offer – the advice and help from our members who have a wealth of hard-won knowledge and experience, Heart Children, which is now offered free of charge to members, and help with the costs of those extras which can make such a difference, from wetsuits to holidays, MedicAlerts to colouring books. Can you help to bring the poster and leaflet to the notice of hospitals, libraries and schools? Then as soon as a child has a diagnosis, the family there is a better chance that the family will be aware of the support we offer.

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HeartLine’s Annual General Meeting for members The AGM is an opportunity for all members to come to a meeting, vote for trustees, and raise issues affecting HeartLine families. Attached is an invitation (a calling notice) for the AGM. This year it will be held on Saturday 28 April, 11.30 at CHF, Level One, 2-4 Great Eastern Street London EC2A 3NW. Please try to come if you possibly can. If you can’t come but can nominate someone to the Board of Trustees, that would be helpful – all that’s needed is enthusiasm, hard work and a passionate interest in supporting our families. There is a form on page 7 and an addressed envelope enclosed for your reply.

PGL short breaks We are planning to run two PGL Activity Projects this year at Boreatton Park Shrewsbury ♦ for 12 heart children aged 9 to 17, from 10-13 August ♦ for 12 brothers and sisters of heart children—again aged 9 to 17, from 17-20 August You will need to deliver your child, with suitable clothing and sleeping bag, to the site by 3pm on Friday, and collect at Midday on Monday. The cost of the three night break is covered by HeartLine, including activities, accommodation, food and insurance. The breaks are organised through PGL, the market leader for activity holidays. Their policy is to help children to take their first steps towards independence and give them the opportunity to build self-confidence and make new friends. Each break will be accompanied by experienced HeartLine parents, three for the heart children and two for the brothers and sisters. Children choose the activities within their limitations from a wide number - abseiling, archery, arts and crafts, balls sports, climbing, circus skills, cycling, fencing, kayaking, kite making, motor sports, orienteering, nature trails, snorkelling and swimming. There is a qualified leader for all activities, and your child’s safety is of paramount importance. If you would like your child to take part in this very special experience, complete the form on page 8

Pencil in 9th June for the Summer Party Bring a picnic and join us at HeartLine's annual get together for the families of heart children. This year the members’ party will be held at an exciting new location, The LookOut in Hyde Park, London. The LookOut, is a natural haven in the heart of London where children and adults can uncover, discover and be inspired by the natural world. In addition to the usual art activites and outside events, this year the Royal Parks team will lead sessions for pond dipping and also minibeast hunting. It is a day of fun for all the family (hopefully one to remember), an opportunity to meet other families and build our support networks. Fill in the form on page 8 and send it in the enclosed envelope to get your invitations—first come first served! 2


BACCES chooses HeartLine BACCES is a non-profit charitable organisation which was originally set up in 1970 by two British European Airways (BEA) stewards who wrote a comedy review and staged it at York House, Twickenham, UK for two nights. It was so popular that it ran for a further three sell out nights at Chiswick Town Hall. Since then the company have been producing reviews and, after 1978, a pantomime in aid of national and local charities, which have met with considerable success. The company writes, directs and produces the whole show with very little help from outside sources. In 2011 it was announced that the company had made £1 million for their nominated charities in the 40 years it had been performing. For 2012 they were celebrating their 40th year of productions and HeartLine was lucky enough to be selected as one of their main charities to support. A HeartLine family, Roz, Emmanuel, Elsie and Manuella Aluko, were invited along: they write:

Now That's What I Call Panto!! Thank you, HeartLine, for providing us the tickets for such a lovely event: It was our first pantomime, so we were not sure what to expect but we were looking forward to an enjoyable evening. The event was at the Becks Theatre in Hayes, Middlesex which is about thirty minutes from where we live in the Wembley area. VIPs We got there about twenty minutes prior to the start, and we went to the VIP lounge where we were able to have some snacks and mingle with other people attending the show. HeartLine organised the VIP reception for us. Although we did not know anyone, it was nice to able to chat with other people ahead of the show. It seemed most people had a close connection to British Airways I guess we could claim a connection to British Airways as well as we have been British Airways passengers in the past. The evening was fabulous. The children joined in the choruses and were natural as part of the audience. We had a break between the first half and second half of the show, and had some pop-corn and drinks which the children enjoyed as part of a cinematic experience. Some of the cabin crew and airline jokes were not lost on us, and the performers were very good and funny. It was a special occasion for BACCES, too, as they were celebrating the fortieth year of the production and paid tribute to events in the past.

MedicAlert Discount If your child needs a MedicAlert—perhaps because he or she is starting school and is on warfarin, has a pacemaker or ICD, an allergy, or any condition somebody treating your child in an emergency would need to know— contact HeartLine to get a £19.95 discount. For information about MedicAlert see www.medicalert.org.uk or call 0800 581 420

Can your workplace help us out? Many employers will offer help to a charity of special interest to an employee —please contact HeartLine –admin@heartline.org.uk or 033 00 22 44 66 if your workplace is interested. 3


She’s Bond, Silver Bond …. Emilly Carter is our very brave HeartLine member running the London Marathon this April to raise funds for HeartLine.

Tough Having started training in September, Emilly is battling against the very harsh winter to keep up with her training. A combination of treadmill runs and venturing outdoors where possible have helped Emilly go from an inexperienced runner to running long distances. “It has been tough as I haven’t done this before, but I’m keeping up with my training at the gym when the weather is cold and I’m running a half-marathon soon to prepare”, Emilly says. But for Emilly taking on this challenge to fundraise for HeartLine was not a hard decision to make. “My son Charlie was diagnosed with a congenital heart defect when he was only one month old. We were living in Spain at the time and found it difficult to find the information and support we needed to understand and deal with Charlie’s condition. After searching the internet for a long time, we came across HeartLine and we instantly found advice and information from people who have gone through exactly the same thing”.

Support The instant response by HeartLine members, the active on-line community of parents with children with heart conditions and the people Emilly met since Charlie was first diagnosed, made all the difference to her and her family. So, fundraising for HeartLine is a way to give something back. Our small charity has seen some difficult times recently, having to cut back on expenses and losing our small team of dedicated staff was a tough decision. For Emilly, this was all the more reason to put herself forward as the charity runner for our one and only silver bond place at the London Marathon 2012. “Since I joined HeartLine, my older children have had the opportunity to enjoy breaks with PGL holidays, making friends and meeting other siblings of children with heart conditions”. The annual HeartLine summer party for families has also been extremely helpful for Emilly as a way to meet in person and speak to other parents and HeartLine members, the very people at hand to support one another when necessary.

Dedication of Fundraisers The services we offer our members are vital in helping build a strong support network for the families that need it. We could not have been able to be there for all our members without the dedication of fundraisers like Emilly. We are very grateful to Emilly for taking on such a big challenge for HeartLine and come April we will be cheering her on all the way to the finish line of the 26.2-miler! Please help Emilly’s efforts by donating to her sponsorship page: http://uk.virginmoneygiving.com/emillycarter . You can also post a note of encouragement on our Facebook page: https://www.facebook.com/HeartlineUK .

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Isobel Poppy Wears Red for Congenital Heart Disease Awareness Isobel was one month post-op in this pic. She was born with tetralogy-type congenital heart disease: a large VSD, overriding aorta, pulmonary valve and pulmonary branch stenosis, PDA, PFO and functionally bicuspid aortic valve. Her recovery in hospital was a bit slow, she had kidney failure for three days, was "depressed" and didn't take any notice of us for 11 days. She couldn't suck or swallow after she was extubated though she got her suck back after three days and came home with an NG two weeks after the operation. She started to suck her bottle a week and a half ago but doesn't take much so we still rely on the NG tube for most of her milk. She was very difficult to settle once we got home, it was like having a newborn again but after a few days she started smiling and interacting with us far more than she did before her operation. She seems so much happier in herself. Her operation was the best thing that has happened to her, though it didn't seem like it at the time. I think as a parent the most important thing to have to keep you sane is patience, if you go at their pace and not worry about when they are not at the expected pace of recovery you'll get through it a lot easier than if you set you own targets about when you'd like to take them home, etc. Easier said than done!

HeartLine’s Valentines Draw results Congratulations to the winners of the HeartLine Valentines Draw. And while we are here, thank you so much to those of you who sold on tickets, and made additional donations with your returns:

Draw

Winner

Ticket no

Prize

1st

Mr M Paton

19669

£250

2nd

Tanya Virgo

03107

Free Caravan holiday

3rd

Mrs J Mantle

09937

Voucher for two Wizard of Oz tickets, donated by The Really Useful Group

4th

Mrs S Taylor

00266

Toys R Us £30 Voucher, donated by Mr and Mrs Ogden-Lewis

5th

Kara Pavey

04778

M&S £20 Voucher

6th

Mr & Mrs Baldrian

05304

HeartLine Teddy

7th

Mrs S Parker

09419

HeartLine Teddy

8th

J Coggon

15400

John Lewis Token £10

9th 10th

Derek Holden P Brown

16424 05217

Selection of toys donated by Hasbro Selection of toys donated by Hasbro

11th

Kaye Ross

14382

Selection of toys donated by Hasbro

12th

Tighe

10409

Selection of toys donated by Hasbro

13th 14th

T Jackson J Stevenson

01089 05929

Selection of toys donated by Hasbro Selection of toys donated by Hasbro 5


Wetsuits We are very pleased to be able to offer HeartLine members free wetsuits for their children with heart conditions. We know they make a big difference to children who get blue and freezy in the warmest of pools. Call HeartLine on 033 00 22 44 66 or email admin@heartline.org.uk Please let us know the size required from the tables below – ages are for guide only, so please check your child’s measurements before ordering: Size

Age

XS

0-6 m

Shoulder to crotch 34-36cm

chest

S

6-12m

36-40cm

M

12-18m

39-42

4144cm 4447cm 48-52

L

18-24 m

42-46

52-58

XXXXS

3-4 y

20

15

XXXS

4-5 y

20

17

XXS

6-7 y

22

21

XS

7-8 y

24

22

S

9-10 y

26

22

M

10-11

28

24

L

11-12

30

24

XL

12-13

32

25

XXL

13-14

34

27

XXXL

14-15

36

27.5

Caravans There are still plenty of slots for a HeartLine caravan holiday—especially during the low season outside of the school holidays. The Mablethorpe caravan in Lincolnshire sleeps eight for a very reasonable £131 a week low season, £336 high season. Oakdene in the New Forest sleeps six for £158 low season and £352 high season. Both caravans are in parks with wonderful facilities—just right for a HeartLine family. For more information call Sheila on 01189 619965 or email, thepickardfamily@hotmail.com with ‘Caravan Booking’ in the title.

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Annual General Meeting Saturday April 28th 2012 AGM CALLING NOTICE The annual general meeting for HeartLine Association will be held at CHF, Level One, 2-4 Great Eastern Street London EC2A 3NW. The meeting will begin at 11.30 and is expected to last for an hour. Agenda Apologies for absence Minutes of the 2011 AGM and matters arising Reports from the Chair and Treasurer including presentation of the accounts for the year ending 31 October 2011 Proposal and vote to accept the accounts Nomination of auditors Proposal to change to the constitution Election of Trustees AOB If you plan to attend, let us know by calling 033 00 22 44 66 or emailing admin@heartline.org.uk. You are invited to nominate or second a nomination for a trustee please complete the slip at the bottom of this page and return it in the enclosed addressed envelope by 1 April 2012

I am a HeartLine member / We are HeartLine members I/We intend to attend the AGM Name(s) ……………………………………………………………………………… Telephone /email address ……………………………………………………………. I/we would like to make nominations to the Board of Trustees as shown below. (Nominations can only be made with the agreement of the person being nominated and must be seconded) Nomination

proposed by

Chair Vice Chair Treasurer Trustee Trustee

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seconded by


PGL short breaks 2012 Because of the limited number of places we cannot guarantee your child a place. To request a place, please complete the form below and send together with a refundable deposit of £50 for each child in the enclosed addressed envelope. If your child is accepted, this will be paid into HeartLine’s account and returned to you after your child has attended. HeartLine member name: …………………………………………………………. Address ……………………………………………………………………………………… Email ………………………………..

Telephone ……………………………….

Heart children break Friday 10 August— Monday 13 August Name of child 1

Date of birth

Name of child 2

Date of birth

Brothers and sisters break Friday 17 August— Monday 20 August Name of child 1

Date of birth

Name of child 2

Date of birth

———————————————————————————————————————————

Summer Party 9 June 2012 If you would like to attend the HeartLine Summer Party please fill in the form below and include it in the enclosed envelope – invitations will be sent out on a first come, first served basis HeartLine member name: …………………………………………………………. Address ……………………………………………………………………………………… Email ………………………………..

Telephone ……………………………….

Name other adult: …………………………………………………………………….. Heart Child name …………………………………………

Age ……………..

Other child Name ………………………………………..

Age ……………..

Other child Name ………………………………………..

Age ……………….

Signed: ............................................................ Date: ..............................

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