tofs Summer 2010

Want to make a difference? Fundraise for TOFS.Please call us on 0115 961 3092

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

Pictured: Eden Pollock celebrates her mum’sfundraising achievements! Read moreabout Eden on p2.

Inside� TOFS Annual Report update� TOFS Trustees – goodbye and hello!� Adult TOFs conference� TOFS children’s party

...and much more!

Annual Report Issue!

From the editor...Welcome to your AnnualReport issue of Chew

It’s officially summer! So when youget the time, why not sit back andenjoy your special Annual Reportedition of Chew? Inside we share ourachievements from November 2008to November 2009. We say a bighello to our new Chairman and tellyou about the new TOFS Presidents,Gren and Christine Shepherd! We areexcited to bring you details of thefirst TOFS Conference for adult TOFs,which, as well as featuring manygreat speakers, will also be attendedby John Black, President of the RoyalCollege of Surgeons. There’s also lots,lots more to read about in yourannual report Chew...Please do carryon keeping us in touch with yournews and do send your photos(preferably in digital format)!

Enjoy your summer.

Camilla Zajac, Chew Editor

� Debbie and Peter Reid from Belfast - Poppie born 10/12/09� Stacey Corrin and Kelvin Connolly from Tiverton - Alexander born11/09/09

� Lissa Holmes and Alex Coulter from London - Albert born 14/03/08� Emma Butler and Justin Carroll from Basingstoke - Logan born10/01/09

� Lorraine and Robert Moyney from Norfolk - Jack born 09/11/09� Belinda and Lee Simpson from Oxford - Alexander born 21/11/09� Dr Dorit Kunkel and Dr Emma Stack from Hampshire - William born01/06/09

� Stacey Osborne and Craig Harvey from Belfast - Saul born 29/08/09� Wendy Harnan-Kajzer and Jake Everett from Derbyshire - Rose born04/06/09

� Natalie Taylor and David Clarke from Essex - James born 20/03/10� Jemma and Jason Jefferies from Kent - Draven born 15/02/10� Svetlana and Stephen Horsnall from Doncaster - Aleksei bornApril 2006

� Emma and Wesley Barlow from Stockport - Harry born 07/09/08� Kelly Neylon and Mostyn Witham from Hull - Louis born 17/05/10� Stephane and Sarah Malbranche from Surrey - Otto born 28/04/10� Lyndsey Hay and Kevin Shaw from Sunderland - Megan born05/07/06

� Lucy and Arron McGowan from Birmingham - Thomas born08/03/10

� Tracey Waite from Malvern - adult born with OA� Mark Gardner from Bradford - adult born with OA� Carole James from Corby - auntie to child born with TOF

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Chew cover story: Eden PollockPictured on the front of this issue is Eden Pollock with donations sentto us by her mum, Maxine. Eden is already accustomed to being apublic face of TOFS! Maxine and her partner Peter Alders kindly agreedto Eden being the poster child for our campaign to raise awareness ofTOFS amongst hospitals. The family was then featured in the CoventryTelegraph last December with the paper highlighting their support forTOFS. Maxine recently wrote to us with a donation, telling us:“In December Henley Green Residents Association held a psychicfundraising night for TOFS on behalf of Eden. They raised £420 on thenight. The psychics also donated their fees to TOFS. We would like tosay a big thank you to Henley Green Residents Association forchoosing to raise money for TOFS.”

Are you interested in helping to publicise TOFS and oursupport for families? Why not take part in our TOFSAwareness Week in October? You can find more details onp10.

WELCOMEA warm welcome to new members!

A great result from a special psychics night!

Christopher was born nine weeks prematurely in June2006 at Dorchester Hospital and was diagnosed withlong gap TOF/OA. He was transferred the next day toSouthampton General for surgery. Soon afterwards itwas apparent that Christopher had severe reflux. Ahard time ensued. Through it all, Christopher's smileand personality kept us going. Christopher wasfitted with a jejunostomy and then a gastrostomywhich proved a turning point for him in terms ofgrowth. In 2008 he had a fundoplication (Seeglossary on p8 for definitions). This was a partial wrapand has improved his reflux. Because of the refluxChristopher had negative associations with food andwould regularly gag at the sight of it, but throughperseverance and lots of messy play, his eatinggradually improved. Now he enjoys a wide variety offood. Christopher attends pre-school and was the'Star' of the Christmas Show watched by very proudparents and his little sister Lucy, born healthy in 2009.So to anyone starting out, stay positive. Things doimprove.

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Helen Dash writes from Dorset:

Issues with an oesophagealpouch - can you help?We recently heard from an adult TOF who has beenhaving problems with eating, due to changes in heroesophageal pouch. Do you have experience of asimilar issue? If so, please get in touch via the TOFSOffice.

I have an oesophageal ‘pouch’ which used to take the formof a bulge at the front of my neck immediately below mytracheostomy scar. Over the years it has moved and is nowfurther back on the right side (out of sight), but it is stillcausing problems with getting infected. The infection hasblocked my Eustachian tube and I now suffer from chronicsinusitis. I have no sense of smell or taste and my hearingis very poor. I always take forever to eat a meal – aroundan hour. And it has always has to be washed down withsome sort of liquid. Dinner is awash with gravy – puddingwith custard etc. And a cup of tea or coffee always helps towash it down.

When the food got stuck in the bulge at the front of myneck, I had to press a finger to my neck to push the foodfurther down my food tube. Now that the bulge is furtherback, I can no longer do this and unfortunately my incidentsof choking are becoming more frequent – reallyembarrassing when I am eating in public, but even morescary when I am on my own.

When I am suffering a choking incident, my natural instinctis to have a drink of water, but this seems to force the food(and water) further down my windpipe, making thesituation worse. Any advice on how I should handle thissituation would be most welcome.

Family UpdateHappy Birthday to all our children who havecelebrated a birthday recently. Our birthday fairyhas been sending out cards to all of you underthe age of six. And congratulations to those ofyou aged six and over in June, July and August

Members’ birthdays in June, July andAugust – 6 to 16 years

Steven Sutherland 17/06/1994 Jasmine Nicholls 20/06/1994Michael Flaxington 07/06/1995 Joseph Holmes 15/06/1995Julian Canales 16/06/1995 Jordan Stretton 08/06/1997Lauren Reed 10/06/1997 Ronan O'Connor 24/06/1997 SeanFindlay 28/06/1997 Oliver Maddern 09/06/2000 RebeccaFisher 27/06/2000 Madeleine Clarke 06/06/2001 ImogenAllison 07/06/2001 Leah Brine 14/06/2001 Chloe French21/06/2001 Oliver Piggott 07/06/2002 Rhys Speers11/06/2002 Navada Haggart 14/06/2002 Michael Clement26/06/2003 Aaron Atkinson 03/06/2004 Musa Keyani21/06/2004

Shannon Fraser 09/07/1995 Connor Langridge 13/07/1995Oliver Fry 31/07/1995 Susanna Bannister 03/07/1996 RoryClarke 03/07/1998 Henry Turnell 06/07/1998 Matthew Jones24/07/1998 Hannah Stanger-France 02/07/1999 AnnaWebster 05/07/1999 James Bedell 21/07/1999 JamesMcCormick 22/07/1999 Musfirah Shariff 03/07/2000 HarryCoope 10/07/2000 Louie McConville 11/07/2000 ZacharyGoggin 15/07/2000 Joseph Styles 24/07/2000 Adam CroftsDavies 25/07/2000 Gregory Maller 26/07/2000 AndreasFragias 14/07/2001 Jack Strange 17/07/2002 ThomasTanswell 03/07/2003 Ben Barker 13/07/2003 MadeleineHornibrook 18/07/2003 Abdur-Rahman Khan 28/07/2003Oliver Cannon 01/07/2004 Lewis Carney 02/07/2004 DavidSunjic 29/07/2004

Gavin Woolhouse 10/08/1994 Olivia Oversby 20/08/1994Andrew Walker 29/08/1995 Felicity Poole 12/08/1996Ainsley Rhodes 05/08/1997 Jack Watson 08/08/1997 ElinBailey 14/08/1997 Matthew Heaven 29/08/1997 GabriellaShelton 01/08/1998 Robert Thompson 14/08/1998 CharlotteOdonnell 14/08/1998 Daniel Williams 29/08/1998 BethanWalford 29/08/1998 Matthew Beakhouse 02/08/1999 TomParker 08/08/1999 Catrin Davies 19/08/1999 SophiaCampbell 21/08/1999 Jamie Hodgson 20/08/2000 LewisRaymond Logan 07/08/2001 Eboni Rose Halpin 08/08/2001George Long 10/08/2001 Harriet Hughes 1 3 / 0 8 / 2 0 0 1William Addis 23/08/2001 Sean Canning 16/08/2002 JackCoulston 23/08/2002 Alex Gordon 29/08/2002 GraceNorcup 08/08/2003 Toby Stephens 21/08/2003 FrancesButler 29/08/2003 Sasha White 30/08/2003 Euan Rattray05/08/2004 Amy Scuffins 12/08/2004 Antonia Brown18/08/2004

Happy Birthday

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Annual report updateReport of the Trustees for the year ended30th November 2009

Activities and Achievements:Family support� During the 08-09 accounting period our membership

increased from 1058 members to 1136 members.� We supplied information over the telephone, supported

parents on a personal level and put plans in place forour biennial conference where families will meet up andlearn more about the condition, its cause, treatmentand ongoing management.

Information and sharing� We supplied information to families in the form of

leaflets, brochures, our TOF Child book, and quarterlynewsletter, Chew. Work commenced on the secondedition of The TOF Child, with revised articles andnew topics.

� We organised social events where families met up andforged friendships.

Annual

reportup-

date

TOFS Council of Management reportThe Council of Management held its second meeting of2010 on Sunday 25 April. Our busy agenda includeddiscussion of the following:

� The TOFS Facebook group now has 704 members. The COMdecided that we should advertise the TOFS website on thepage and that we should post a brief update on (say) abi-weekly basis. We also decided to review the activity andmembership of the TOFS Facebook group in six months.

� We committed to hold a one-day conference on SaturdayOctober 16th for our adult TOFS. Sophie Smallwood will beleading our sub-committee on this and has alreadyapproached a number of prospective speakers. Please keepan eye on the TOFS website for further information. MissLeela Kapila has agreed to be the moderator of thisconference. (See more details on p12).

� The COM discussed the need to allocate particularresponsibilities to COM members. Some of these have beenestablished and others should shortly be agreed. We willprovide more detail in the next Chew.

� John Pearce and Graham Slater updated the meeting ontheir on going work to review our procedures and tocomplete our 2010-12 Business Plan.

� As Gren and Christine Shepherd have decided to stand downas Trustees after many years’ service, the COM appointedDuncan Jackson as our new Chairman and John Pearce asVice-Chairman. The COM also decided to invite Gren andChristine to be the first ever Presidents of TOFS (see also thereport on this year’s AGM on the right and p10 of thisChew!)

TOFS AGM Meeting ReportThis year’s AGM was held at the Rosliston Forestry Centre,Derbyshire on May 9 and was chaired by our new Chairman,Duncan Jackson.The key points of the meeting were:� The minutes of the 2009 AGM were accepted as a true andaccurate record.

� The Directors’ Report was presented and the keyachievements of the year duly noted. These achievementsincluded our continued success in fundraising, the revisionof our Memorandum and Articles of Association, updates toour policies, further development of the website, funding ofresearch by Charles Shaw-Smith (one of our MedicalPatrons), a successful conference at Newcastle in October,and the development of our relations with sisterorganisations in Europe.

� The Treasurer’s report was presented and its notes were thatwhilst our financial position remains relatively stable, ourincome is showing signs of decline and we remain heavilydependent on the fundraising activities of families andfriends. The Accounts were accepted unanimously andsimilarly it was proposed and accepted that Lemans bere-appointed as our auditors.

� Sandra Hawkins resigned by rotation as a Director and wasduly re-elected.

� Christine and Gren Shepherd resigned as Directors.� Gill Jackson and Sophie Smallwood were elected as newDirectors.

� The new Chairman Duncan Jackson advised the AGM thatChristine and Gren Shepherd had accepted the COM’sinvitation to be Presidents of TOFS, positions they will holduntil May 2013.

� We continued to develop our website. The communityforum on our website played a big part in our activityover the year with members ‘giving something back’ byoffering each other emotional support.

� We offered advice to members about the benefits theyare entitled to.

� We disseminated information to practitioners fromhealth, education and social care.

� A hospital liaison sub-committee put plans in place todevelop relationships with the bigteaching hospitals to raise awareness of the groupand the ongoing problems that our families face.

Volunteers� We increased our volunteering support with five long

awaited new members on our Council of Managementand almost doubled our volunteer team of telephonesupport with four new volunteers.

Fundraising support� We supported our members in their fundraising

efforts by providing TOFS sponsorship packs andpromoting their efforts on our website.

European Collaboration� We developed relationships with similar organisations in

Germany, Switzerland, Austria, France and TheNetherlands. We agreed with these organisations theprinciple of establishing a pan-European associationand committed as such an association to supporta medical conference on oesophageal disorders, held inFrance in May 2010.

Governance� During 2008-9 we updated our Memorandum and

Articles of Association which were approved bySpecial General Meeting held on 12 July 2009.

� In addition we also reviewed our policies and as aresult re-wrote existing policies and developednew policies for Governance, IT andCommunications.

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FundraisingDonations and fundraisingWe’d like to thank:

� Harriett Ibbotson - £220 donation in lieu of gifts forher 21st birthday

� Heather Marshall - £124.36 donation in lieu ofsending Christmas gifts

� Paul Boanas - £855.26 raised by running theBUPA Great North Run

� Natasha Rigatti Luchini - £240 raised by taking partin the Great North Swim

� Mr K Hanavan - £45 raised by holding a cheese andwine evening

� Peter and Iris Vincent (grandparents of WilliamFlindall) - £10

� The Dowling family, McConville family and the Hiltonfamily - £80 donated in lieu of sending specialfamily Christmas cards

� Dennis Harvey - travel expenses donated back toTOFS

� Sharon Robinson (grandmother to Isla Grayburn) -£167.50 raised at a charity night

� Sue Lewis-Jones - expenses donated back to TOFS� Graham Slater - expenses donated back to TOFS� David Griffiths - £100 donation in lieu of 40th

wedding anniversary gifts to Gren and ChristineShepherd

� Lewis Logan’s Nana Irvine, Uncle Ciaran, AuntieJenny and Great Aunts Molly and Anne - £90donation

� Laurie Linn - £25� Mary Cawley (grandmother to child born with

TOF) - £20� Debbie Jeffery and friend - £120 raised by learning to

play the guitar and, along with their music teacher,sold CDs of their efforts to family and friends

Pictured: Nathan Hill with his mum, Debbie.Nathan’s grandparents Val and MalcolmLongley recently raised £100 by sellingflowers at a social event they organised. Valsays: “I know that Debbie and Darrell are sograteful for the support they have receivedfrom TOFS.”

Corporate and group donations� Staff from Aviva and the Royal Bank of Scotland

- £320.13 raised by taking part in a dress down day� Autodata Ltd - £500 CAF donation� Hargate Primary School - £100 raised through a raffle

and talent competition� Robinson Lodge no.2046, Maidstone - £118� The Starting Gate Pub Restaurant, Colwick,

Nottingham - £354.78 raised by customers and staff� Pupils at Frank House at Hitchin Girls School -

£74.24 (See pictures over the page)� Denholm Transport Limited - £65� Henley Green Residents Association - £420

raised by holding a Psychic Night on behalf of EdenPollock (Read more on p2)

� Lady Bankes Eye Nursery - £50 raised byholding an Easter Egg raffle

� Caring Daycare Ltd - £261.99 raised by holdingsports days, Christmas fayres and dress up days

� The Sunday Post - £50 raised at a CharityChallenge Quiz

� Imarni Grayburn and friends - £230.00 raised bydoing a sponsored silence. Our thanks andcongratulations to Imarni for her successfullynominating TOFS as the school’s charity of the year!

Pictured: Natasha RigattiLuchini who took part inthe mile-long Great NorthSwim in Lake Windermerein September.

Live in or around Newbury and interested infundraising for TOFS?One of our members (thanks Amy!) has kindly nominated TOFS foran exit gate collection at Newbury race Course on Friday 13 Augustbetween 3 and 5.30pm. We're all set - bibbed and bucketed - wejust need YOU to help. We could raise anything between £200 -£1500, depending on how persuasive we are and how lucky orgenerous the punters are on the day!

Interested? Please get in touch with Diane at the TOFSoffice on 0115 961 3092 if you think you can help inany way.

We were delighted to hear about a number ofpeople who took part in the London Marathonand raised a lot of money for TOFS in theprocess! Read all about their efforts on p8.

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In loving memory� Janet Doyle - £150 donation in memory of Sylvie

Perry, great aunt to Isobel Cattle (Read more below)� Denise Fuller - £105 in memory of her late husband

Doug, father to Daisy� Ford Mears & Partners Funeral Directors - £30 in memory

of Doug Fuller� Peter Browne - £708.75 in memory of Iris Guilmin,

grandmother to Serena Browne born with TOF� Peter Marsh & Sons Ltd - £150 in memory of Iris Guilmin� Philip Blatchly Funeral Directors - £176 sent in

memory of John Westgarth late husband to AudreyWestgarth and grandpa to twins Tudor (born withTOF/OA) and Tyler Morgan-Huggett

Pictured: Six year old Isobel Cattle,who was born with TOF/OA. Hergrandmother Janet Doyle sent us adonation of £150. She explains:

“The cheque has been given inmemory of Isobel’s great aunt,Sylvie Perry. It was birthday moneygiven to Sylvie, but unfortunatelyshe died before she could buysomething. We know that shewould have been pleased to donatethis money to TOFS as she followedIsobel’s progress from day one.Isobel is doing very well and isreally enjoying school.”

Pupil power!

Pictured: Pupils in Frank House, Hitchin Girls’ School whoraised £74.24 by having a ‘Purple Day’ for TOFS! They wereinspired to raise money by their teacher, Zoë Powers, whois mum to TOF Colin, who we recently reported asreceiving a first class degree in Computer Studies.

Pictured: Aminah, a year 7pupil where Zoë teaches, whorecently raised £35 for TOFS bydoing a sponsored silence! Weare told this is an extra-specialachievement as she is notusually the quiet type!

Zoë says: “Frank house will carry on raising money for TOFSuntil the end of the school year in July. In addition, mydaughter had a clear out and turned her owl collection(stuffed and decorative, not real, we hasten to add!) intoa donation of £4.06 for TOFS!”

Mark rises to the challengeWe’re always delighted to hear from adult TOFs. Sowe enjoyed reading about the fundraising achieve-ments of Mark Gardner, who recently raised £225by taking part in the Great Manchester Run. Markwas born with OA. He explains:

“Following treatment, whichincluded joining the two partsof my oesophagus throughstretching, I have been able tolead my life unhindered. Theonly noticeable things were myscars and “extra tummybutton,” my slow eating, aweak chest and having the lungcapacity of child. Suddenly,after 34 years, things changed.I was unable to take any sort ofmouthful without it gettingstuck. I had a gastroscopy thinking that, as before, theywould pull out a piece of food. However, this time theyfound nothing. Then in March following treatment atthe Royal Hallamshire Hospital, Sheffield, theydiagnosed that I have severe dysmotility in myoesophagus.

On the 16 May, in aid of TOFS, I ran the GreatManchester Run. This is a 10K run through the streetsof Manchester, effectively from the City Centre to OldTrafford and back. It was the sixth time I had run theevent, but it was also the hardest one. I’m never goingto endanger any world records, but given thechallenges, the sense of achievement is huge.”

That’s footie-tastic!Never mind the World Cup! We were more excited tohear about the charity football match organised by TOFmum, Emma Allez. She tells us:

“The idea for the event grew from ourwanting to help repay in some way allthe support and medical care my sonAshley Jackson received from TheGreat Ormond Street Children'sHospital (GOSH) and TOFS. I decidedto organise a small friendly game offive-a-side with the gimmick being thetwo charities playing against each other in the spirit of good

sportsmanship and fun! My friends atThe Durham Ox Pub in Derby wereinstrumental in raising funds for theday. I managed to rally huge supportfrom local and national companies byway of donations to the raffle.Sponsorship covering the footballscame courtesy of Pidcocks Motorcycles.The Trophy was donated by the

manager of the Soccerdome and the medals were customisedand provided courtesy of Kustomized.co.uk (Derby).

The whole day went very well and was very well attended.Eighteen teams took part and tookover four pitches of the Power leagueSoccerdome. The celebrationscontinued at the evening receptionheld at The Peacock pub in Derbywhere food, karaoke, a fantasticauction and a raffle draw proceededto raise funds! In total the event raised£1,700 split between the twocharities, at £850 each!”

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Running for JoeMick Brown was inspired byJoseph Clapson (see article above)to take part in the Edinburghmarathon. He raised £400,completing the marathon in 3hours and 48 minutes! He tells us:

“I was very happy with the time Iachieved, as the weather was redhot. I was running on behalf of Sarah Clapson and herson Joe. On the tough parts of the run I felt little Joe'sspirit with me which helped me immensely. Well doneto you for the work you do for the families. I was proudto run for TOFS.”

Inspired by JosephIn the Spring issue of Chew we shared the story of SarahClapson and her little boy, Joseph Clapson Watkins. Sadly,Joseph passed away due to Pulmonary Hypertension on 7August 2009. As Sarah shared with us previously, Josephhas inspired her and others in different ways. On 8 May2010, Sarah and Joseph’s dad, Danny held a fundraisingevent to celebrate Joseph’s first birthday for family andfriends who have supported them over the year. Sarahsays:

“The evening was a huge success and everybody enjoyedthe party. We are really pleased to tell you we raised£1,600. We are donating £650 each to you and Downsand £300 for Lewisham NICU and Children’s Hospital. Iam now doing voluntary work with a group called Kids –a Saturday and holiday group for children with disabilitiesand also inclusion/PA work with a little boy who is eightand has autism. Joseph led the way into this work, whichI love.”

Taking the plungeThank you to Corrinne Curtis who braved a 300ftbungee jump to raise money for TOFS. As an aspiringactress, Corrinne didn’t need to put her acting skills tothe test for this particular performance! She says:

“I've always been a ‘doing’ sort of person, always up for achallenge and will try almost anything once, just to be ableto say I've done it. So, after 21 years I suppose my parentsknew me well enough to buy me a Red Letter Day for mybirthday! I decided to go for the 300ft bungee jump, andin the process raise money for two charities: TOFS andS.T.A.R.S. The former supports my wonderful cousin Maya,and the latter my best friend, Jess. I managed to raise£660.54, split 50/50 between the two charities, both ofwhom supported me during my fundraising. It was anincredibly disorientating and wholly uncomfortableexperience, but absolutely amazing! Whilst the adrenalinelasted the whole day, the knowledge that I've given asmidgeon of aid to an important cause is even better! Mayais such an inspiration, as she is such a boundlesslyenergetic, intelligent and confident girl, and I am so happyto be able to help the charity that supports her.”

Taking on the TrioniumElliott Wyart was inspired by hisfiance’s experience of growing upwith TOF to raise £572.82 forTOFS! He braved the TrioniumGreensands Marathon whichcovers a total of 5200 feet ofascent and descent! He says:

“I have been wanting to run amarathon for a while. However, Iwas finding it difficult to motivatemyself to complete one. I knew inorder to complete a marathon I needed more inspiration thanjust the challenge of completing it. When I realised this, I knewinstantly that I wanted to run to raise money for TOFS. I haverecently got engaged to my girfriend who was born withTOF/OA in 1981. She had a repair soon after birth and hadrequired some stretching of her oesophagus until she was fiveyears old, although she's not needed any further interventionssince. She only gets some food stuck when she tries to eat toomuch in one go! I find it amazing to think about the problemsshe had when she was born and how this has been fixed toallow her to lead a normal life. I know from talking to herparents that TOFS was a great support to them, helping themcare for her during this stressful time. I wanted to raise moneyfor TOFS to help you to continue to support the parents andhealthcare professionals who care for these children.”

200 Club WinnersOur latest winners are:March - Jody Margerison-BuckleyApril - Ben DobbsMay - Claire Carey

Whoops!Sorry for an error in the last issue of Chew which saw apicture of Olivia Burnside with a caption naming her asIsobelle Maude! Apologies for the mix up!

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A marathon family effortBy John Pearce with input from Jamie Mills

A staggering 36,984 runners set off from Greenwichone Sunday in late April for the 2010 LondonMarathon. Amongst them were several raisingmoney for TOFS. Jamie Mills has a TOF/VACTERLdaughter Elena, who was born in October 2009, whohas clearly had a very tough time (see p9). Jamiesays:

“Elena has had such a tough life - five operations and fivecardiac arrests - but she isn’t giving up and when I got to24 miles and felt I couldn’t go on, all I had to do was thinkof her and she made all the hurt and pain worthwhile”.

Alison Pearce’s TOF son Robert is now 19 years old anddoing well despite some ongoing health issues. The Pearcefamily have been members of TOFS since 1991 and havenot forgotten the huge amount of help received from TOFSespecially when Rob was small. Alison said “knowing some-one who has experienced what you are going through hasbeen a lifesaver”.

Jamie has raised a wonderful £5500 for TOFS (and some forSports Aid too). Alison’s total is impressive also, at just over£1100, split between TOFS and Great Ormond StreetHospital.

Alison said: “I was doing reallywell up until about 11 milesbut then I felt really sick andweak and had to slow rightdown for the next 3 milesuntil I felt OK again.” Upuntil a skiing accident inFebruary, Alison’s traininghad been going very welland she had been hopingto beat her previous bestmarathon time andachieve a “good forage” sub 4 hours. Itwas not to be, howeverand she was disappointedto finish in “only” 4 hrs57 minutes.

Jamie had hoped to run the marathon in 2009, but wasforced to defer his place because of an injury. He finishedthis, his first marathon, in an excellent 3 hours 50 minutes“but I found the last two miles absolutely gruelling agony”.

The money raised in the marathon will make a bigdifference to TOFS. The efforts of Jamie and Alison alone(well, with their generous sponsors) have raised enough tokeep all of TOFS going for a little more than a month. TOFSis very grateful indeed. Jamie and Alison were not the onlyrunners raising money for TOFS. Kelly and Matt Dignum alsoran the Marathon together, encouraged to do so by theirTOF adult friend Daniel Fuller. They crossed the linetogether at a little over 5 hours. More importantly, theyraised about £760 for TOFS. Thanks very much!

We are grateful for any money raised by sponsoredevents. We can send you official TOFS sponsorshipforms and some suggestions about raising money, aswell as a new-style TOFS T-shirt. If you are tempted totake part, please make sure that you prepare properlyand safely, especially for anything that may be physi-cally taxing or even risky. In the case of marathons, forexample, training lasting several months is normallynecessary. TOFS does not have the expertise to adviseyou, but running clubs generally do!

GlossaryGastroscopy: an examination of the inside of the gullet,stomach and duodenum performed by using a thin, flexiblefibre-optic instrument passed through the mouth.Gastrostomy: a surgically-created connection between theinside of the stomach and the body wall.Jejunal feeds: feeds made through a jejunostomy tube, aspecially designed tube through which a child can be fed. Thetube is inserted through the skin, and then runs either directlyinto the jejunum (a part of the intestines which lies a little wayafter the stomach) or into the stomach and then on into thejejunum.Jejunostomy: A jejunostomy tube is a specially designedtube through which your baby/child can be fed. It is insertedthrough the skin, and then runs either directly into the jejunum(a part of the intestines which lies a little way after thestomach) or into the stomach and then on into the jejunum.

Long segment tracheal stenosis: a rare, but lifethreatening condition, in which, instead of being C-shaped,the rings in the trachea or windpipe are O-shaped. The airwaybecomes very narrow and as physical activity increases throughfeeding or exercise, breathing becomes extremely difficult andsometimes impossible, requiring urgent treatment.Nissen’s Fundoplication: this procedure is commonlyused to reduce Gastro-Oesophageal Reflux (GOR). The loweroesophagus is freed up and the top part of the stomach(known as the “fundus”) is wrapped around the loweroesophagus to make a valve at the junction of the oesophagusand stomach. The hole in the diaphragm through which theoesophagus passes may also be tightened.Reflux: Reflux or Gastro-Oesophageal Reflux is when theacidic stomach contents pass back into the lower oesophagus,which can cause pain, a reluctance to eat and possibleproblems in later life.Slide tracheoplasty: an operation to widen the airwayand reduce the breathing problems associated with trachealstenosis. It uses the body’s own tissues, so there is no risk ofrejection.

Pictured below:Mills Family

Pictured above:Alison Pearce

9TOFS Conference WorkshopsTOFS at the Royal College ofPaediatrics and Child HealthWe have been trying to raise awareness of TOFS in themedical profession recently. We believe that, even in theage of Google, many members find us via information atHospitals and/or recommendations from doctors. Ideally,we would like to get to the point where every doctor whomight come across a TOF would know that our supportgroup exists.

As part of this drive a team representing TOFS recentlyattended the Royal College of Paediatrics and Child HealthSpring Conference at Warwick University. This is one of thelarger gatherings of child-health doctors, and TOFS had a smallstand at the associated exhibition. Over the three days theteam met and spoke with a whole range of child-healthspecialists. Practically all were aware of TOF as a condition, butonly about one third of them knew beforehand that TOFSexists: so obviously our awareness-raising activity is useful. Theteam gave out some of our posters (intended for hospitaldisplay) and some of our various leaflets and back copies ofChew. They also had quite a number of requests to sendinformation to colleagues at various hospitals, which we will befollowing up.

A big thank you goes to the RCPCH, which allowed us to attendfor free (we could not have done it otherwise!) and to OfficeManager Diane Stephens (who did most of the work toassemble our stand, pictured) and Trustees Graham Slater,Dennis Harvey (with wife Christine) and John Pearce who werethere "on the day".

In July we are expecting to exhibit at the British Association ofPaediatric Surgeons meeting in Aberdeen.

Are you still attending hospital clinics for follow-up? Is thereany TOFS literature on display? If not please let us know thecontact details and we will follow it up.

Lille International workshop reportThe first ever international workshop on EsophagealAtresia was held in Lille, France on May 27 and 28. Therewere attendees (the majority of whom are leading medicalconsultants) from many countries across the globe, andpresentations were made by attendees from France, UK,Belgium, The Netherlands, Sweden, Finland, Canada andthe USA. Amongst the speakers was one of our MedicalPatrons, Professor Lewis Spitz.

A range of topics were covered under the headings ofenvironmental factors, pre-natal diagnosis, challenges insurgical procedures, reflux, extra-digestive complications, andoutcomes of OA/follow-up care.

This final topic included a slot for support groups such as TOFSand together with our sister organisations AFAO (France), KEKS(Germany, Austria, Switzerland), VOKS (The Netherlands), andOARA (Australia), we put on a 40-minute presentation whichexplained our aims and objectives and some of the key projectsbeing undertaken. One of our trustees, Graham Slater, led thispresentation and he believes that this opportunity to put across

our message to over 200leading medical consultantswas of immense value.During the Q&A session atthe end of our presentationProfessor Spitz took the op-portunity to make some verysupportive comments aboutour activities which further strengthened the impact of our pres-entation.We also had the opportunity to further develop relationships withour sister organisations and indeed we made our presentationsunder the banner of EAT (Esophageal Atresia andTracheo-esophageal fistula Support Groups). We will share ouraims for further collaboration with these groups in a later editionof Chew.Away from the main presentations we held a number of briefmeetings with medical consultants from a number of countriesincluding Italy, USA, Russia, and Poland. We also discussedwith a doctor and parent of a TOF child from Slovakia heraspiration to establish a support group similar to ours.Full details of the programme can be seen atwww.esophageal-atresia2010.com, and abstracts of all thepresentations including those by EAT will be posted on theTOFS website at www.tofs.org.uk over the coming weeks.

About ElenaThrough his marathon effort, as described on p8, JamieMills managed to raise over £5,500 for TOFS. It is very muchappreciated. Jamie also gave us an update on his daughter,Elena:

“Elena was born in October 2009 with TOF/OA as part ofVACTERL. While her TOF/OA was successfully fixed on thesecond day she has had continued respiratory andgastroenterological problems. Following aspirationpneumonia at two months she had a Nissen’sFundoplication and a gastrostomy tube fitted. (Seeglossary on p8 for definitions). However after a number ofreturn trips to hospital, her respiratory problems continuedto deteriorate and she eventually ended up on ECMO(lung/heart bypass) and was finally diagnosed with the rarecondition of long segment tracheal stenosis. She had a lifesaving ‘slide tracheoplasty’ operation at Great OrmondStreet in May this year (see definitions on p8).

Recovery has been slow and she is still not out of hospitalbut she is out of intensive care and is happy and laughingagain. The past seven months have been a roller coaster forour family – we have a two year old son called Teddy – butwe have found the support provided by TOFS invaluable.While all TOF children are individuals we have found theleaflets, book and forum both informative and reassuring”.

Elena Mills in hospital, Christmas 2009

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Hello Duncan Jackson,Our new Chairman

Duncan may already be familiar to you. As along standing member and Trustee he is a wellknown face at TOFS events. Here we find a littlemore about him and his aims for his new role!

Duncan, tell us a little about you and your familyI am Deputy Head teacher of a secondary school in SouthDerbyshire. I mainly teach music, but I also teach ICT. My mainhobby is playing the tuba in orchestras, brass bands and brassquintets!

I was married in August 1998 to Gill. We have two children,Laura and Alec. Laura, now aged nine, was born a TOF/OA witha long gap, but a large bulb area at the top of her oesophaguswhich was cut/folded out and made into her oesophagus. Herchest drain caused scaring on her oesophagus and shesubsequently has had 30 dilatations over the past eight years.Laura also has hydrocephalus (excess fluid on the brain). Alecnow aged five, doesn’t have a TOF, but at birth suffered fromcollapsed lungs. After initial life threatening problems, he madea full recovery.

My wife, Gill works at the same school as me, teaching music,singing and piano. This year Gill joined the TOFS Council ofManagement and is responsible for organising the TOFSchildren’s parties.

How did you become involved with TOFS?I first got involved with TOFS as a member gatheringinformation about the condition. I became a Trustee afterthe Nottingham conference, which was our first TOFSconference. Gill and I decided after all the help we had hadnow was the time that I could pay back some of the helpgiven to us by TOFS. I then became Secretary of TOFS forthree years. I decided to take on the role of TOFS Chairmanbecause others had enough faith in me to ask me - and Ithought I’d give it a go!

What is it like to be involved with TOFS as amember of the Council of Management?Itʼs great to have the opportunity to meet lots of other TOFparents. At times itʼs hard work, but itʼs always rewarding.Events organised by TOFS were important to us and now itʼsimportant to me to ensure that these continue now and in thefuture as, as a parent there is no greater comfort thantalking to other parents in the same situation.

What would you like to say to the outgoing TOFSChairman, Gren Shepherd?I’d like to say our outgoing Chairman, a huge “Well donemate!” On a more serious note I would like to say to bothGren and Christine - our sincere thanks for all the hard workyou have put into TOFS for the last 25 years. You will beboth missed greatly as friends and Trustees and for yourwealth of knowledge about TOFS. But both Gren andChristine will continue to be a part of TOFS’ development intheir new role as Presidents of the charity! The TOFSTrustees have invoked their powers to appoint Presidentsand/or Vice-Presidents and, have offered Presidencies for aperiod of three years each to Christine and Gren Shepherdin recognition of their 25 years of continuous service toTOFS. (More details to follow in the next issue of Chew).

What would like to achieve as the new Chairman ofTOFS?My aims as new Chairman of TOFS are to increase the TOFSmembership and to continue the good work alreadystarted. I also aim to develop our relationships withhospitals and consultants and to continue to support allfamilies who require help. In my role I’d also like to see TOFScarry on supporting research into why children are bornwith the TOF/OA condition and to help inspire even morepeople to fundraise to allow us to keep on supportingfamilies.

How would you like to see TOFS develop in thefuture?I would like to see TOFS continuing as before - supportingfamilies through events, phone conversations, conferencesand through the website. TOF families and friends are a bigpart of this by doing things like organising support events,coffee mornings and get togethers in their area. It’s alsogreat to have people’s support at conferences. Friends andrelatives can also help by volunteering to become a mem-ber of the COM or if they can’t commit to joining the COM,to take on a role on the behalf of TOFS. Finally, membersand friends who can help with fundraising and helping toraise awareness of TOFS and TOF/OA at their local hospitalwill also play an important part in our future development.

TOFS Awareness WeekSunday 10 – Saturday 16 October, 2010We are excited to announce that a special TOFS AwarenessWeek will take place from 10-16 October. The week will focuson raising awareness of our work amongst families, medicalprofessionals and others throughout the UK. We would loveyou to get involved, whether that’s through a specialfundraising event, a get together, or an awareness raising visitto your local hospital. The week will finish, in fitting style, withour first conference for adult TOFs (More information on backpage of this edition of Chew).

See more about the TOFS Awareness Week onthe back page. For ideas and tips on how totake part, please contact Diane and Jayne at theTOFS Office on 0115 961 3092.

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Having fun at the TOFSChildren’s Party 2010!Every year the TOFS Children’s party gives parents and kidsprecious time and space to have fun together. As you can see,this year’s event was no exception! The beautiful RoslistonForestry Centre was the venue for our 2010 gathering. Thevenue was organised by one of our new Trustees, Gill Jackson.Thanks Gill!

We were delighted to welcome around 30 adults and 30children to take part in our afternoon of fun. Kids and grownups alike were kept entertained with a two hour circus work-shop by Magical Mayhem! There was also plenty of time forfamilies catch up with each other or make new friends. Partyguests also enjoyed a spread of delicious food. We’d like to saya very big thank you to the entire Jackson clan for all their helpin donating and making the food for the party.

Couldn’t make it to the party, but interested in meeting upwith other TOF families? Why not organise your own gettogether for TOFS Awareness Week? Find out more on p10.

More photos will follow in our Autumn Chew.

TOFS office staffed:

Monday to Wednesday: 8.30am - 2.30pmThursday: 8.30am - 1pmFriday 8.30am - 12.30pm

Out-of-hours emergency telephone support:

Please call our answerphone on 0115 961 3092 for thenumber of the volunteer currently providing this service.

support for familiesof children born unable to swallow

tofsTOFSAddressTOFSSt George’s Centre91 Victoria Road,Netherfield,Nottingham NG4 2NN

Telephone0115 961 3092

Fax0115 961 3097

Emailoffice@tofs.org.uk

Websitewww.tofs.org.uk

Registered charity number327735

Company number2202260

Medical PatronsRaymond Buick MB Bch FRCSJames Dickson FRCS FRCSE FRCPCHBruce Jaffray BMedBiol ChM FRCS(Glas) FRCS (Paed)Leela Kapila OBE FRCSPaul Losty MD FRCS (Paed)Gordon A MacKinlay FRCSEd FRCSSean Marven FRCS (Paed)Agostino Pierro MD FRCS(Eng) FRCS(Ed) FAAPCharles Shaw-Smith BM BCh MRCP PhDLewis Spitz PhD FRCS

Non-Medical PatronsRichard Briers OBE CBEDennis Foxon BADavid Griffiths MA (Oxon)

TOFS PresidentsGren and Christine Shepherd

Council of ManagementHon. Chair: Duncan JacksonHon. Vice chair: John PearceHon. Treasurer: Sandra HawkinsHon. Secretary: Graham SlaterSue Lewis-JonesDennis HarveyGill JacksonSophie Smallwood

Office personnelOffice manager: Diane StephensAdministrative assistant: Jayne Allitt

The views expressed in Chew are not necessarily those of theeditor or the Council of Management.

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TOFS Events� TOFS Awareness Week - Sunday 10 - Saturday 16 September� TOF Adults Conference - Saturday 16 October� Council of Management meeting - Sunday 19 September

To find out about fundraising and get togetherevents organised by our members, please visit ourwebsite at: www.tofs.org.uk

TOFS Awareness Week -Can you help?Interested in taking part in the TOFS Awareness week from10- 16 September? Please just do one thing for TOFS – whetherit’s a coffee morning, non-uniform day, supermarket collection,sponsored swim, or getting your local newspaper to run andarticle about you and TOFS...The possibilities are endless! Ifevery member raised £5, this would pay for our next edition ofChew, a Children's Party and further hospital liaisondevelopment.

Please get in touch with the office on0115 961 3092 to let us know what you’re

thinking of doing.

Taking Bookings NOW for TOFSAdult Conference 2010Saturday 16 October, 2010 9:30 - 5pmThe Grimstock Hotel, Gilson Road, Coleshill,Warwickshire B46 1LJ(Very close to the NEC, at the junction of M6 and M42)

Are you an adult with TOF/OA, a relative, healthcareprofessional, or will your TOF teenager soon bemaking the transition to Adult Care? If so, thisconference is for YOU!

Spaces are limited -Book over the telephone Now.

Call TOFS 0115 961 3092