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tofs chew Summer 2011

Support for families of children born unable to swallow TOFS (Tracheo-Oesophageal Fistula Support), the charity that supports families of children with Tracheo-Oesophageal Fistula and associated conditions

Pictured: Looking cool for school! Meet six year old TOF, Toni, having fun with her little sister, Lexi. Read more about Toni - and her dad’s recent fundraising achievement - over the page!

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Book for the 2011 TOFS Conference! Updating you on changes to benefits News and pictures from our London Children’s party Family and adult TOF news

...and much more!

Do we have up to date contact details for you? If not, please send us your phone number and email!


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From the editor... Welcome to your Summer 2011 issue of Chew! We hope you’ve been able to enjoy some sunshine in between the rain showers this summer! Your latest Chew includes your 2011 TOFS Conference booking form. So if you want to come along in October, but haven’t booked your place, now is the time to do so! Inside we also share news about our new medical patron, how our London children’s party went and how you can join us at a very special Newbury Racecourse event! And there’s also fundraising news, dedicated adult TOF pages and an update on our hospitals campaign! Keep on sharing your news with us (with photos in digital format please!). We look forward to hearing from you soon!

Camilla Zajac, Chew Editor

WELCOME

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Kate Brown from Derbyshire - Felicity born 11/12/02 Gayle and Colin Mitchelmore from Manchester - Elliott born 01/12/10 Giulia Monasterio and Cristian Saltos from London - Julian born 31/10/10 Nicola and Alan McLelland from Plymouth - Spencer born 02/11/10 Kirsty Lucas and Tony Melville-Taylor from Harlow - Madison born 16/07/07 Debbie and Rob Ingle from Hampshire - Audrey born 08/10/10 Evelyn Svoboda and Beat Gutjahr from Switzerland - Shelley born 20/01/96 Sara Hendy and Stuart Roper from Stafford - Kian born 31/01/11 Marilyn McCallum and Mark Cox from Inverclyde - Aimee born 09/02/11 JJ Fueser and Baris Akyurek from Canada - Maximilian born 14/01/11 Hayley and Sam Thomson from Surrey - George born 15/05/10 Louisa and Ben Duncan from Cleveland - Joshua born 29/03/11 Laura Dale and Karl Ellis from Hampshire - Chloe born 07/01/03 Cheryl and John Wharton from Mersyside - Grace born 01/11/10 Sara and James Edmundson from Aylesbury - child due 12/08/11 Tellervo Nenonen from Helsinki, Finland - adult TOF Marilyn Batchelor from Sussex - grandparent to William (born with long Gap OA) Mandi Nicholson from Epsom - auntie to twins, one born with TOF Jade Seille from France - auntie to Anna Seille (born with TOF/OA and VACTERL) EWB Consulting – Managing Director Mark Bartrum is parent to Elliott born with TOF/OA

Chew cover story: Toni Brown Meet Antonia (Toni) Brown, who after a difficult start, is doing really well. Her parents, Jacqueline and Gerry, tell us that, “despite all her health problems and the challenges she faces due to Down’s syndrome”, Toni started Primary 1 in mainstream school last year! Toni’s dad Gerry, along with three of his friends, Gary Telfer, Liam Woods and Peter Hilley, recently raised £500 by completing the Pedal For Scotland Cycle event. Congrats on the big cycle, Gerry and friends - and carry on enjoying school, Toni.


Changes to benefits ahead Contact a Family recently sent us a copy of their guide to future benefit changes for families with disabled children. This provides a valuable update on the upcoming changes to benefits and how they affect families and children. For a full copy of the guide or for more information about the changes to benefits and how they affect you, please contact Contact a Family’s Freephone helpline on 0808 808 3555. For more support on benefits issues relating to TOF/OA, member Rachel Hayes can help. Please contact her through the TOFS office.

Support Stop the DLA Takeaway Contact a Family and The Children’s Trust are continuing with their campaign Stop the DLA Takeaway and now have several supportive MPs on board. Graeme Morrice MP for Livingston has tabled an Early Day Motion (EDM) in support of the campaign and to raise awareness of the issue. They need your help to ensure as many MPs as possible sign the EDM and show their support for the campaign.

According to Contact a Family: “Currently a child’s Disability Living Allowance (DLA) is stopped after 84 days in hospital and the parents’ Carer’s Allowance is suspended. The regulations are penalising vulnerable families at one of the most distressing times of their life and Contact a Family and The Children’s Trust are calling for them to be scrapped.” If you want to support the campaign, please email your MP to ask them to sign the EDM Disability Living Allowance for children in hospital, number 1520.

Find out more at: www.cafamily.org.uk/dlatakeaway or www.thechildrenstrust.org.uk/dlatakeaway

Getting together in your area Want to meet TOF families near you? We’re organising get together events in Brighton and in the North East. Find out more over the page!

TOF exchange wanted

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If you’ve attended recent TOFS conferences, you may remember meeting Frédéric Armand from AFAO, the equivalent of TOFS in France. Frédéric recently got in touch to ask about an exchange for his son. My son Jules is 16. He will be 17 in October. He has a long gap OA. He would like to spend two weeks in Germany or in England in August to improve his language skills (he has been learning English for six years and German for four years). We worry about letting him go far away and we would like to find an OA family to welcome him. We would like to organise an exchange with a German or English OA teenager. If a family agreed to welcome Jules, he would be very happy to work as volunteer in the TOFS office. If you’re interested, please contact Frédéric via the TOFS office.

A great family tradition This year another special family fundraising tradition continued! If you’re a regular reader of Chew (and we hope you are) you will probably remember the hard work of young TOF Alice Wilsmore and her family in taking part in the 7 mile Thurrock Cycle Marathon year after year. While Alice couldn’t take part this year, her mum (Ann-Marie Offord), her dad (Ian Wilsmore), uncle (Andrew Offord) and 13 year old sister (Laura Wilsmore) completed a very wet marathon and raised £120 for TOFS! They believe it is the seventh time they have taken part in the event! Well done and thank you for all your commitment to fundraising for us!


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tofs

Events

Newbury Racecourse Family Fun Day, Sunday 31 July, Newbury Racecourse

Our Newbury Racecourse event is going to be bigger and better than ever this year! Read more about the day on the right and book your place NOW!

2011 TOFS Conference, Saturday 15 October, Holiday Inn, Birmingham M6, Jct 7 Book your place now by completing and sending in the booking form on p8! (Crèche with limited places available)

TOFS get together, North-West of England, Sunday 18 September Call us now on 0115 961 3092 to find out more and book your place

TOFS get together, Brighton, Saturday 12 November

Call us now on 0115 961 3092 to register your interest

Events for adult TOFS

We will be launching a dedicated programme of events for adult TOFS later on this year. See our website for further details

TOFS Council of Management meetings: Sunday 18 September St Georgeʼs Centre, Netherfield, Nottingham 10.30am - 2.30pm Sunday 20 November Teleconference, 10.30am - 12pm

Full steam ahead at Kirklees Light Railway

Joanne and John Winspear (mum and dad to Dylan and Isobel) wrote to say how much they enjoyed the recent TOFS family day at Kirklees Light Railway:

Gee up and join us for family fun at Newbury Racecourse!

Family Fun Day at Newbury Race Course on Sunday 31 July – Free Admission for TOFS members!

Join us for a very special family fun day out at Newbury Racecourse on 31 July. Youʼre invited to come along, completely free of charge, with a little fundraising for TOFS thrown in. Every year, Newbury Racecourse has a family-friendly day of (horse) races. The racecourse organises lots of fun things for the children to do, and this year, TOFS has been invited along so that members can enjoy themselves and also so that TOFS can raise some money. We will be official Charity of the Day. The adults will be asked to shake a bucket for TOFS for a little of the afternoon.

The horse races for the day are already planned: there will be two pony races at 12:45 and 1pm, followed by seven more traditional (flat) horse races starting between 1:40 and 5pm. TOFS members will have a private under-cover rest area, kindly donated to us by the racecourse. Between races, the horses and jockeys can be admired in the parade ring. The racecourse is also organising lots of family-friendly sideshows to fill up the between-race times. The precise line-up of these is yet to be announced, but last yearʼs Family Fun Day included bouncy castles, face-painting and appearances by cartoon characters. This year we know that Noddy will be appearing. Fitting in with that special appearance, TOFS Trustee Sophie Smallwood will be on hand to sign copies of her Noddy book! Youʼll need to book tickets if you want to come along, rather than just turning up “on the day”. Weʼll confirm with everyone who has been in touch a little nearer to the time just how to do this. This should be a very special family day out. Please get in touch with us as soon as possible and by 20 July at the absolute latest if you are interested in coming along. Email info@tofs.org.uk or call us on 0115 961 3092.

“It was great to meet families who we have had phone and forum contact with, but never met before in person, and also nice to meet others who live in the region and have services and professionals in common. Special thanks to the Jackson family who organised everything so well, and for the generosity of TOFS in funding a special fun day out for our children.”

See the next edition of Chew for a full report from our Kirklees event!

TOFS at Newbury Racecourse last year.


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The TOFS London Children’s Party By John Pearce, TOFS Trustee

This year’s first TOFS event happened at the end of April. We welcomed TOF families to the play facilities at Coram’s Fields in central London. It has been a long time since TOFS held a children’s party in London. We had a superb turnout of over 80 people. Moreover, the weather smiled upon us, enabling many families to enjoy a chat and a picnic on the grass, whilst the younger ones played in the various outdoor play areas within the Coram’s Fields site. Entertainer Magical Mayhem was indoors (we hired both the halls at Coram’s Fields – it might have been raining!) showing off his various circus skills and tricks to keep everyone entertained. During the afternoon, Cath Cobden presented TOFS with a cheque for funds raised (read more about Cath’s fundraising efforts on p10). TOFS trustee and Noddy author Sophie Smallwood was present, offering signed copies of her recent Noddy book. TOFS chairman Duncan Jackson, his wife Gill (also a Trustee) attended with their family, as well as Trustee John Pearce and wife Alison. Thanks are due to our office manager Diane for most of the organisational aspects, and keeping things going on the day. We very much hope to run a similar children’s party at Coram’s Fields at about the same time next year. By the way….Coram’s Fields is just opposite the rear of Great Ormond Street Hospital – so many of you will know it! It occupies the site of the former Foundling Hospital, and is named after Captain Thomas Coram (1668-1751). After spending many years at sea and in America, he set up an institution in London “for the maintenance and

education of exposed and deserted young children”. This became the Foundling Hospital, which was built between 1742-1751, and which looked after foundling (abandoned or orphaned) children until the 1950s. Most of the main building was demolished many years ago, but several of the original outbuildings remain in use by Coram’s Fields today. The venue is now run by an independent charitable trust as a haven for play. It has (amongst other things) play areas for children of several different age groups, some animals, a café and halls for hire. Entry is free, but adults can only enter with a child!

Welcoming our new medical patron:

Mr John Duffy

We are pleased to announce that Mr John Duffy, Consultant Thoracic Surgeon at City Hospital in Nottingham, recently became a TOFS medical patron. Mr Duffy’s interests include general thoracic surgery, minimally invasive oesophageal surgery (anti-reflux surgery; thorascopically assisted oesophagectomy) and open anti-reflux surgery including redo surgery and chest wall surgery. At last year’s adult conference Mr Duffy gave a presentation from a surgical perspective on the long-term outcomes of those born with TOF/OA. He will be running a workshop at the TOFS Conference in October.


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Keeping in touch – improving our e-mail communications By Dennis Harvey, TOFS Trustee

For TOFS to provide you with the information and help you want, it is vital that we are able to communicate with each other quickly and effectively. Do we have your current email address? The TOFS organisation is run by a Council of Management comprising seven Trustees and Diane, our office manager. We meet four times a year, and supplement those meetings with regular telephone conferences to discuss specific issues. Our discussions are wide ranging, but basically focus on what we can do to improve and develop the services and support we are able to offer our members, within the constraints of the funds we have available. All of the Trustees have some personal experience of the TOF condition, either as parents, grandparents, or as TOFs themselves, but we still need your input in telling us what you expect from TOFS. At present our primary means of keeping in touch with you is through our website, our quarterly newsletter Chew, telephone, and post. All have their drawbacks. Our research shows that the majority of members visit the site only infrequently. Chew is published at three monthly intervals so it cannot be used for disseminating important information quickly. The telephone is impractical for bulk communications and postal services are very expensive. Today nearly all of our members are on email and this is certainly the cheapest and most effective means of communication available to us. Over the last few months we have been carrying out an exercise to validate all of your email addresses which we hold on our database. An email has been sent to every member. 20% were not delivered which means that the address on our records is no longer valid. Of those emails which were delivered, some 45% remain unopened. It could be that they ended up in the junk mail box, or perhaps they were not opened deliberately because the sender (TOFS) was not recognised. If you are one of those who did not receive an email from us, please can you contact jayne@tofs.org.uk to confirm your current preferred email address? We hope, in future, to maintain regular contact with all of our members by email so it is important that our email addresses are accurate and up to date. It is now nearly four years since our present website was established with the support of Children in Need. In that time things have moved on and we are now considering how we can update and improve the website. Again we need your help. Please tell us what changes you would like to see, and what new features you would like us to add.

Please get in touch with the TOFS office on 0115 960 3092 to let us have your up to date contact details – or to send us your thoughts on what you’d like to see on the website.

Happy Birthday

to all our TOF-OA children six years and under (under sixes will receive a card).

June Michael Flaxington 07/06/1995 Joseph Holmes 15/06/1995 Julian Canales 16/06/1995 Jordan Stretton 08/06/1997 Lauren Reed 10/06/1997 Ronan O'Connor 24/06/1997 Sean Findlay 28/06/1997 Oliver Maddern 09/06/2000 Rebecca Fisher 27/06/2000 Madeleine Clarke 06/06/2001 Imogen Allison 07/06/2001 Leah Brine 14/06/2001 Chloe French 21/06/2001 Oliver Piggott 07/06/2002 Rhys Speers 11/06/2002 Navada Haggart 14/06/2002 Michael Clement 26/06/2003 Aaron Atkinson 03/06/2004 Musa Keyani 21/06/2004 Millie O'Donnell 08/06/2005 Mwaura Ngugi 22/06/2005 Christopher Mallett 24/06/2005 Aaron Downey 24/06/2005 Nathan Beckley 30/06/2005

July Shannon Fraser 09/07/1995 Connor Langridge 13/07/1995 Oliver Fry 31/07/1995 Susanna Bannister 03/07/1996 Henry Turnell 06/07/1998 Matthew Jones 24/07/1998 Hannah Stanger-France 02/07/1999 Anna Webster 05/07/1999 James Bedell 21/07/1999 James McCormick 22/07/1999 Musfirah Shariff 03/07/2000 Harry Coope 10/07/2000 Louie McConville 11/07/2000 Zachary Goggin 15/07/2000 Joseph Styles 24/07/2000 Adam Crofts Davies 25/07/2000 Gregory Maller 26/07/2000 Andreas Fragias 14/07/2001 Jack Strange 17/07/2002 Thomas Tanswell 03/07/2003 Ben Barker 13/07/2003 Madeleine Hornibrook 18/07/2003 Abdur-Rahman Khan 28/07/2003 Oliver Cannon 01/07/2004 Lewis Carney 02/07/2004 David Sunjic 29/07/2004 Rachel Finnigan 02/07/2005 Daniel Maimbo 08/07/2005

August Andrew Walker 29/08/1995 Felicity Poole 12/08/1996 Ainsley Rhodes 05/08/1997 Jack Watson 08/08/1997 Elin Bailey 14/08/1997 Matthew Heaven 29/08/1997 Gabriella Shelton 01/08/1998 Robert Thompson 14/08/1998 Charlotte Odonnell 14/08/1998 Bethan Walford 29/08/1998 Daniel Williams 29/08/1998 Matthew Beakhouse 02/08/1999 Tom Parker 08/08/1999 Catrin Davies 19/08/1999 Sophia Campbell 21/08/1999 Jamie Hodgson 20/08/2000 Lewis Raymond Logan 07/08/2001 Eboni Rose Halpin 08/08/2001 George Long 10/08/2001 Harriet Hughes 13/08/2001 William Addis 23/08/2001 Sean Canning 16/08/2002 Jack Coulston 23/08/2002 Alex Gordon 29/08/2002 Grace Norcup 08/08/2003 Toby Stephens 21/08/2003 Frances Butler 29/08/2003 Sasha White 30/08/2003 Euan Rattray 05/08/2004 Amy Scuffins 12/08/2004 Antonia Brown 18/08/2004 Lewis Boddy 06/08/2005 Matthew Smith 12/08/2005 Wyatt Taylor 16/08/2005 Ben Horley 22/08/2005 Millie Kelly 31/08/2005


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tofs 2011

Conference – Book NOW!

Not booked yet for TOFS 2011 Conference? All you need to do is remove the slip over the page, complete it and send it back to us. Due to take place on Saturday 15 October at the Holiday Inn, Birmingham M6, Jct 7, the TOFS conference will be running to a new format this year. We’ve had great feedback on previous events, but we wanted to include our members even more. So this year’s event includes a forum where parents can share their experiences. What hasn’t changed is that we’ll be putting on a great range of speakers and workshops. Speakers at this year’s event include Anthony Landers, Sean Marven and Gordon Mackinlay. Once again, the conference is being organised by Sandra Hawkins, our very capable treasurer, along with her subcommittee.

Got an idea for a workshop? New TOFS patron John Duffy will be delivering a workshop. We want your ideas and input about other workshops you would like to see at the conference. This is your conference, so let us know! Please call or email the TOFS office.

Do you know a speech therapist in or around Birmingham? If so, we’d love to hear from you. We’re keen to feature a speech therapist at this year’s conference. Again, please contact the TOFS office as soon as you can.

Keep track of your medical records If you attended our adult conference last year, you may remember a discussion we had about keeping and accessing your medical records. We recently heard from TOF mum, Melinda Laws, who had some worrying news about her son Ben’s medical records. She told us that all notes relating to the surgery Ben had for his TOF condition have been destroyed. Melinda is concerned about this in case Ben ever needs further surgery. Melinda wanted to share her experience to alert all adult TOFS to keep track of their records, especially if you don’t need treatment for several years. According to Melinda’s research, records can be destroyed after the patient’s 25th birthday unless treatment is currently ongoing. Have you had a similar experience – or a more positive one? Please let us know via the TOFS office.

Mary Parkes writes from Tonbridge:

It is with some sadness that we have decided to finish our membership of TOFS. Nicholas is eighteen and a half. We have benefited immeasurably from knowing that we were not alone over the years and found the arrival of the newsletter such an encouragement. We made a decision early on to be positive and to encourage Nick to push himself. He grew up thinking that he could do anything his peers could do. This part of his personality has earned him many friends and the admiration of adults he meets. Nick recently suffered a blow to his confidence when he was turned down by the Army on medical grounds (a mixed blessing indeed to us as parents!). Nick said, “It’s the first time anybody has told me I can’t do something and then not given me a chance to show them I could.” We wish you well for the future development of such a useful organisation.

Measuring children’s quality of life We’ve been asked by University College London to invite you and your child to take part in a trial of Satisfaction In Life in Children With Own Report Measures (SILCWORM). This is an online game which measures quality of life for children aged 4 to 10 years with a chronic illness to help assess the treatment of their long term medical condition(s). The team will provide us with the results of TOF children who take part.

How can my child take part? The team is looking for child volunteers who have been diagnosed with an illness/condition or who have no condition, who are developing normally and are aged between 4-10 years. Your child can play the game online, giving their feedback to a set of questions as they move through the game. As a parent/guardian, you will be asked to complete a consent form on behalf of your child. All information will be kept completely confidential. If you have any questions, please email:silcworm@ucl.ac.uk. To take part, go to: http://www.wazdaka.com/silcworm/ (please please enter your child’s condition as 'test'.)


2011 Conference Booking form

Please complete this booking form, and post to TOFS, along with your payment, by cheque Please list below the names of members and friends attending ............................................................................

............................................................................ ............................................................................ ............................................................................ ............................................................................ Number of delegates @£20 per person: ............ Total: ............

Please list below b o o k i n g c o n t a c t information Name: .......................................................................... Address: ............................................................................

............................................................................ ............................................................................ ............................................................................ Email: .................................................................. Phone: .................................................................

Please complete this section only if crèche facilities are required. List below names of children up to 10 years requiring a creche place during the Conference - note numbers are limited (NB please include any relevant medical information on separate sheet). £10 (first child), £7.50 (second child) £7.50 (third child)

Name: ………………………...........................…...... Age………………..

£10

Age…………….….

£7.50

Age………………..

£7.50

Name : ……………............................…………........

Name:…………………………………………..............

Total enclosed - please make cheque payable

to TOFS (Delegate cost + creche, if applicable)

£...........................................................................

Workshops are subject to demand - Please tick the circle to the right of the topic: Reflux

OA Parents sharing experiences

DLA

Tracheomalacia

Baby Resuscitation

Our TOF Children’s achievements

Feeding problems VACTERL

Genetics Teenage and Adult TOFS

Fundoplications

Respiratory Problems

Any other:

Please let us know if you have any special needs for the conference (eg wheelchair access), and, if you are bringing children, please let us know the sorts of foods they can eat: ....................................................................................................................................................................... ....................................................................................................................................................................... If you have any objection to photos being used in CHEW or on our website please indicate: ................................................................................................................................................................. Please list below any questions you would like answered by our medical panel (continue on a separate sheet if necessary) ....................................................................................................................................................................... ....................................................................................................................................................................... .......................................................................................................................................................................



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Ad u lt TO Fs St Helen's in Merseyside: Adult meet-ups

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Flying high From staff nurse to flight attendant, adult TOF volunteer Wendy Colbeck shares her story:

Are you a TOF adult interested in meeting up with other TOF adults? We’re currently putting together a programme of get togethers. If you’d like to get involved or make some suggestions about locations or anything else, please let us know via the TOFS office.

My name is Wendy Colbeck and I recently started volunteering for TOFS. I attended the Adult TOFS conference last October which I found extremely informative and enjoyable and I decided it was time for me to give a bit back!

Can you help? Second fundoplication repair

I was born in 1975 at Nottingham Highbury Hospital. Within hours, the medical staff discovered I had a Tracheo Oesophageal Fistula, something that neither of my parents had ever heard of. For the first year or so I was in and out of hospital having my oesophagus continually widened to stop it from collapsing.

Mum Maria Clifford recently got in touch to ask for advice from adults or parents of adults who have undergone a successful fundoplication repair. My name is Maria. I am a mum to a 15 year old TOF/OA, Jordan. He also has dextrocardia and has had severe tracheomalacia (see glossary on p11 for definitions). Jordan has had a good few years, but at the end of 2010 he started being sick often, and had a weak appetite. After speaking to his paediatric consultant, he was referred (once again!) to the Royal Victoria Infirmary in Newcastle, this time under the care of Mr Bruce Jaffray. Two endoscopies down the line showed that Jordan’s Nissen Fundoplication (see glossary on p11 for definitions) (done when he was two years old) had come undone. He has severe reflux, ulcers in the gullet, and two hernias in his stomach. He was put on Lansoprasole which settled the ulcers and the reflux, and he is eating much better. Mr Jaffray wants to keep Jordan on the medication for one year and then scope him again. If he’s doing OK, he will stay on it for another year, then be scoped again with a withdrawal of meds and then see if reflux returns. The surgeon is reluctant to repair the old Fundoplication and said that the operation has risks and can be life threatening. I think he wants to wait another couple of years for Jordan to grow and get stronger before making a decision. However, Mr Jaffray did say that if things changed and an op was needed, he would have to do it. I am completely petrified. Raymond (Jordan’s dad and my husband) is calmer about it and said just wait and see (thank goodness for his level head!). I just wanted to know about possibly getting in touch with parents of TOFs or with TOF adults who have had a second Fundoplication repair successfully done. Jordan is a very brave young man. He just carries on as normal, studying hard. He goes swimming five times a week for Cockermouth Swim Club and also goes to athletics once a week at school. Most of all he enjoys playing Warhammer Games (40K). It would give us enormous courage and comfort to know that other families have gone or are going through the same as us. All this has reopened painful memories of the very difficult early years of Jordan’s life. Editor’s note: Do you want to share your experiences with Maria? If so, please contact her via the TOFS office by calling 0115 961 3092 or emailing: info@tofs.org.uk

At the age of 10 I was attending one of my routine check ups when it was discovered I was suffering from scoliosis. Within two years the degree of the curve was so severe that it was causing other complications. In 1987 at the age of 12 I underwent surgery to pin both my hips to hold them in place. Later that same year they placed two Harrington rods, one either side of my spine, to rectify the curve. This had a great effect. Within 12 months of the last operation, life began to take a turn for the better. The doctors even allowed me to start horse riding again. I also spent a lot of my time volunteering for the British Red Cross as a youth member. Eventually I became a youth worker, running my own groups in Nottingham for young Red Cross members. I went to college to do my A levels and then applied to go on to nursing college. My Scoliosis and my TOF never held me back and in 1996 I qualified as an adult nurse. After I qualified I worked as a staff nurse on an acute Medical Admission Unit. However I was not certain that this was the life for me. I had always wanted to travel and see as much of the world as possible and there in my local paper was an advert for flight attendants with Virgin Atlantic Airways. I thought “I’ve got nothing to lose” and applied. Three months later I was on my first ever flight to San Francisco! 14 years later I am still enjoying my flying career. It has given me wonderful life experiences visiting the USA, Canada, China, Japan, Australia, Africa, India, and all over the Caribbean. I have also met lots of famous people along the way! My TOF has never held me back. Don’t get me wrong, I do have the occasional problem. As an adult TOF, there are a very few times in everyday life that it affects me. I will always have the now world-famous TOF cough and less than six times a year, food may get stuck. It must be very daunting for new parents when you don’t know what the road ahead holds, but for me it has been a road with a bit of a bumpy start with a few bumps in the middle, followed by pretty plain sailing. I just look at it as something that makes me just a little bit unique! Wendy Colbeck


Fundraising 10

Donations and fundraising For ongoing support we’d like to thank:

 Mary Cawley (grandmother to Caitlin McCoy) - £20 Andrew Clayton (granddad to Joe Styles) - £50 raised by saving loose change  Richard Curtis (born with TOF) - £268.40 raised by taking part in the Swanage Half Marathon. Richard started doing the half marathon in 2008 and running is now one of his favourite sports.  Christine Harvey - £270 Richard ready for the run! donation in lieu of receiving gifts for a special birthday  John & Shirley Jory - £520 raised in lieu of gifts for their golden wedding anniversary  Diane Maskrey - £109.82 raised to date by setting up a Justgiving page last year  Dominic Rowley (Dad to Freya Rowley), Freya’s godfather Mike Pope and friend Adrian - £779.65 raised by completing the Yorkshire Three Peaks  David Paton, grandfather to TOF Lewis Carney - £15 raised by doing a presentation at the Shepway Active Retirement Association  Hayley Slater - £126.90 raised by completing the Liverpool 5K Santa Dash  Karina Tyrer - £28.25 collected from customers who visited her shoe shop, Stomp Shoes  Mike Westbury (grandad to Shannon Fraser) and musical partner Dave Courtney - £500 raised from the sale of a CD produced to celebrate 50 years of performing together  Members of the TOFS Council of Management who kindly donated some or all of their expenses back to TOFS

Corporate and group donations  Deloitte Foundation - £500 (to match the amount raised through Justgiving by Chris Welch who completed Run to the Beat)  Fairline Boats Ltd - £50 (Thanks to Carole James for putting our name forward)  Howdens Joinery Co - £818.18 raised from the sale of several display kitchens  Provincial Grand Lodge of Surrey - £200  Michelle Stapleton and her students doing a beauty therapy course at South Nottingham College £135.21 (Thanks to Heidi Timson for putting our name forward)  Southern Water - £108.50 collected by Cath Cobden (pictured below with TOFS Chair, Duncan Jackson) and a friend on a dress down day. Cath’s son Sam recently enjoyed himself at our London children’s party at Coram’s Fields (Read more on p5)!

 Stonegate Amateur Dramatic Society - £1000 (Allocated by Susan Bowie, director of the group. Mary-Jane Paterson, mum to Daisy, born with TOF/OA, is a member of the group)  University of Bath HR Department - £250 raised at an Easter cake sale. Alison Flindall is mum to TOF William and HR Manager in the department. She says that William and sister Olivia, (pictured below) enjoyed getting involved - and eating the cakes too!

In Memory  Exeter and Devon Crematorium - £22.31 collection made in respect of the late baby Thomas Roberti, aged two months - son to Michelle and Noel Roberti and brother to Brooklyn (born with TOF/OA)  Horrobin & Davenport Funeral Service - £130 in memory of the late Mrs Mary Kilburn, mother to Mrs Marilyn Bell

200 Club Winners

Congratulations to our latest winners: February March April May

- Deborah Williams - Christine Churchward - Tracy Robinson - Jeanette Tanswell

Please keep it coming! It's great to see so many people raising money for TOFS. You really did TOFS proud in 2010 and we do not expect to raise anything like as much money in 2011. Still, fundraising in the first six months of this year is running a little behind where we hoped it would be. With the substantial net cost of this year's October conference coming up, that isn't a welcome thought. So please keep up the fundraising effort!


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TOFS exists, you know! By John Pearce, TOFS Trustee In the past couple of years, TOFS has stepped up its effort to let the medical profession know we exist, so that the doctors can point patients towards us. We think that awareness is high amongst doctors and nurses who are closely involved in TOF treatment, such as specialist surgeons. But awareness amongst the more general medics who might see TOFs for follow-up is not necessarily so high. So we again attended the Royal College of Paediatrics and Child Health conference in April this year. This is a major event for all medical personnel involved with treatment of children, and there is a small exhibition associated with it. The organisers were good enough to allow TOFS and a handful of other charities to have a small space in the exhibition for free! Fortunately, the event was very accessible at Warwick University so the total cost of our attendance was very low – we would not be doing this otherwise! We took along our banners and a selection of our literature for our stand. Our main aim was simply to tell the attendees that there is indeed a support group for the TOF condition. Interestingly, the vast majority of people we spoke to had not previously been aware of TOFS, so we clearly do need to promote ourselves to the medical profession. We made many good contacts, who we will be following up with in due course. Thanks are due to Office Manager Diane, volunteers Wendy Colbeck (read more about Wendy on p9) and Alison Pearce and Trustees Graham Slater and John Pearce, who each spent a day at Warwick manning our stand.

The most significant step forward was the signing by all the founder member organisations of a Memorandum of Understanding (MOU) which had been drafted by TOFS Trustee Graham Slater as a means of clarifying the aims of the organisation. This document sets out the objectives of EAT and its governance principles, and now that this document has been signed this new European federation of TOF/OA support groups exists in a provisional form. The next step of registering EAT should be completed shortly once its draft Articles of Association are agreed (considerable progress in this matter was also made in Stuttgart). The other significant development at the EAT meeting following the signing of the MOU was the election of the Provisional Board of EAT. Those elected as Board members were: Graham Slater (TOFS Trustee) as President (Chair), Jo-Anne Fruithof (VOKS, Holland) as Vice-President, Frederic Armand (AFAO, France) as Treasurer, and Evelyn Svoboda (KEKS Switzerland) as Secretary. This Board will automatically become the full Board of EAT once the federation is registered. All delegates to the EAT meeting were pleased to receive (via Frederic Armand) copies of the May 2011 edition of JPGN (Journal of Pediatric Gastroenterology and Nutrition) which contains an article written jointly by the presenters from the support groups, based on the presentation made in May last year in Lille at the First International Workshop on Esophageal Atresia (reported in the last issue of Chew). The EAT logo (pictured above) which was designed by Karin Brinker (a Director of KEKS) and first unveiled last year at the First International Workshop has been adopted as the federation’s logo. The expected further developments of EAT will be reported in the next issue of Chew. In the meantime we are pleased that this recent major step in international collaboration has been made.

For more details of the Journal of Pediatric Gastroenterology and Nutrition, please follow the link: http://journals.lww.com/jpgn/pages/default.aspx

Glossary Definitions of technical and medical terms mentioned in some of our articles and family updates

EAT: the latest developments By Graham Slater, TOFS Secretary

In the last issue of Chew we wrote about the intention to establish an international support organisation to be known as EAT. Here is an update on the latest developments. On 14 May, the latest EAT meeting was convened in Stuttgart, Germany, coincidental with the annual conference of our German sister organisation, KEKS. Representatives of the six European TOF/OA support groups (representing Austria, France, Germany, Holland, Switzerland and the UK) who intend to form EAT were present.

Dextrocardia: a condition in which the position of the heart is reversed and is on the right side of the chest, instead of on the left. Reflux or Gastro-Oesophageal Reflux (GOR): the acidic stomach contents pass back into the lower oesophagus. This can cause pain, a reluctance to eat and possible problems later in life. Nissen Fundoplication: this procedure is commonly used to reduce Gastro-Oesophageal Reflux (GOR). The lower oesophagus is freed up and the top part of the stomach (known as the ‘fundus’) is wrapped around the lower oesophagus to make a valve at the junction of the oesophagus and stomach. The hole in the diaphragm through which the oesophagus passes may also be tightened. Tracheomalacia: floppiness of the trachea (windpipe).


support for families

of children born unable to swallow

TOFS Address TOFS St George’s Centre 91 Victoria Road, Netherfield, Nottingham NG4 2NN Telephone 0115 961 3092 Fax 0115 961 3097 Email office@tofs.org.uk Website www.tofs.org.uk Registered charity number 327735 Company number 2202260 Medical Patrons Raymond Buick MB Bch FRCS James Dickson FRCS FRCSE FRCPCH John Duffy FRCS, MS, SF(CTh) Bruce Jaffray BMedBiol ChM FRCS(Glas) FRCS (Paed) Leela Kapila OBE FRCS Edward Kiely FRCS FRCS(1) FRCPCH Paul Losty MD FRCS (Paed) Gordon A MacKinlay FRCSEd FRCS Sean Marven FRCS (Paed) Agostino Pierro MD FRCS(Eng) FRCS(Ed) FAAP Charles Shaw-Smith BM BCh MRCP PhD Lewis Spitz PhD FRCS Non-Medical Patrons Richard Briers OBE CBE Dennis Foxon BA David Griffiths MA (Oxon) TOFS Presidents Gren and Christine Shepherd Council of Management Hon. Chair: Duncan Jackson Hon. Vice chair: John Pearce Hon. Treasurer: Sandra Hawkins Hon. Secretary: Graham Slater Sue Lewis-Jones Dennis Harvey Gill Jackson Sophie Smallwood Office personnel Office manager: Diane Stephens Administrative assistant: Jayne Allitt Administrative assistant: Sam Hatfield The views expressed in Chew are not necessarily those of the editor or the Council of Management.

AGM Meeting – 8 May 2011

This year’s AGM was held at St George’s Centre on 9 May and was chaired by our Chairman, Duncan Jackson. The key points of the meeting were:

 The minutes of the 2010 AGM were accepted as a true and accurate record.  The Directors’ Report was presented and the key achievements of the year duly noted. These achievements included our first-ever Adult Conference, continued success in fundraising, attendance at the RCPCH and BAPS annual conferences, attendance at the Nurses’ Study Day, a successful day at Newbury Racecourse where we were the official charity of the day, and the further development of our relations with sister organisations in Europe, including jointly presenting with them at the first-ever international medical conference on OA which was held in Lille, France.  We were also delighted that Mr Edward Kiely FRCS FRCS (I) FRCPH agreed to become one of our patrons.  The Treasurer’s report was presented and whilst it reported a relatively successful year, it also noted the ongoing challenges of maintaining a stable income particularly in the current economic climate, and that we remain heavily dependent on the fundraising activities of families and friends. The Accounts were accepted unanimously and similarly it was proposed and accepted that Lemans be re-appointed as our auditors.  Dennis Harvey, Sue Lewis-Jones and Graham Slater resigned by rotation as Directors and were duly re-elected.

Families affected by Laryngeal Cleft Is your child affected by Laryngeal Cleft? We recently heard from Mark Romera, who has set up an online community for parents: Laryngeal Cleft is a rare congenital disorder and little is known about this anomaly. We have started a European website www.laryngeal-cleft.com for parents with children who have a Laryngeal Cleft. Information can be found about Laryngeal Cleft and parents can create their own free account in a special community and make contact with other parents in Europe struggling with similar problems. We hope parents can exchange experiences and information with each other for the good of their children! To join the community, go to: http://www.laryngeal-cleft.com/content/laryngeal-cleft-european-supportgroup emergencies. For more information, call Newlife on 0800 902 0095 or visit www.newlifecharity.co.uk

Helping make IT happen

We’d like to say a big thank you to TOF dad, Tom Burnett. Through his company, Newmead Solutions Ltd, Tom is helping us to stay as efficient as possible in helping TOF families. Tom is completing a free review and update of our IT systems and is also donating software to TOFS. Thank you, Tom!

TOFS office staffed: Monday to Wednesday: 8.30am - 3.00pm Thursday and Friday: 8.30am - 2.00pm

Out-of-hours emergency telephone support: Please call our answerphone on 0115 961 3092 for the number of the volunteer currently providing this service.

design: www.instaprint.co.uk / copywriting: www.greenlightcopywriting.co.uk

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TOFS Council of Management Report

tofs_chew_Summer_2011  
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