tofs Spring 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: Olivia Burnside has fun onthe beach! Read moreabout Olivia on page 4.

Inside� Your family updates� How you can make a

difference to TOFS� Parents’ feeding tips� Your fundraising stories

...and much more!

From the editor...Welcome to your Spring issue ofChew. As the sun (finally) starts toshine, here are plenty of familyupdates and other stories. Movinginto a new season is all aboutovercoming challenges - andmaintaining TOFS’ development is nodifferent. We want to be able to lookahead to a long future helpingfamilies of children born unable toswallow. But we need your supportto do it. You can find out more inside.On that note, you will find plenty ofgreat stories about all kinds offundraising efforts in this issue.Thank you so much for all yoursupport. You’ll also find details of ourAGM and children’s party, aninternational conference on TOF/OA,parents’ tips on feeding a new TOFchild and an update from the TOFSCouncil of Management meeting inJanuary.

Please do carry on keeping us intouch with your news and do sendyour photos (preferably in digitalformat)!

Here’s wishing you a very happySpring.

Camilla Zajac, Chew Editor

WELCOMEA warm welcome to new members!

� Natalie L’Herroux and Antoine Fraval from France - Emile born26/04/09

� Sara and Peter Reynolds from West Sussex - Cameron born01/10/09

� Emily Nightingale and Alisdair McGregor from London - Rosieborn 05/07/06

� Melissa Fell from Carlisle - Ruby born 27/02/09� Louise and Jamie Mills from London - Elena born 12/10/09� Laura Raby and Michael Buxton from Kings Lynn - Reece born16/06/08

� Mark and Kathryn O’Malley from Peterborough - Jack born04/09/09

� Olivia and Fraser Simpson from High Wycombe - Benedict born29/01/09

� Vicki Kingston from New Zealand - Joshua born 14/11/09� Victoria Badby and Russell Phillips from Poole - Tyler born 21/10/09� Sarah and Paul Twiggs from Bristol - Ava born 16/01/09� Hayley Barnes and David Gladstone from Kent - Finley born01/10/09

� Rachael and Dominic Rowley from Harpenden - Freya born02/01/10

� Michelle Duxbury and Kevin Duguid from Aberdeen - Jake born20/08/09

� Delyse and Trevor Quinlivan from Queensland Australia -Bernadette born 05/10/00

� Sarah and Philip Melling from Bristol - Baby girl due March 2010� Francesca Liuzzi from Manchester - adult TOF� Alice McElhinney from Bexhill-on-Sea - adult TOF� Sheila Leadbetter from Horsham - Grandparent to Cameron bornwith OA

� Pamela Wise from Kent - Grandmother to TOF baby James� Julie Ince from Peterborough - Neonatal Staff Nurse atPeterborough Maternity Unit

2

Four yearold TOF,IsabelleMaude

Daisy Blossom Buckley at her christeninglast year.

Prom QueenThe school prom is a very special occasion, so wewere delighted to see this lovely photo of LibertyDavies at hers. It was sent to us by Liberty’s dad,Mark Davies. Regular readers will remember thatwe featured a picture of Liberty and her brothersand sister on the cover of Chew in Summer2008. Mark tells us:

“Liberty will be 17 in January. She has justcompleted her GCSEs. She attained 7A* and 4A grades! Amazing considering the start shehad in life, but a huge thanks to TOFS for allthe support and information.”

Congratulations on your results Liberty!

Thank you to Claire Cooper-Jones who sent ussome great photos of her twin sons’ Christening.You may remember Oliver and Harrison (who wasborn with TOF) featured on the front of theAutumn ’09 issue of Chew! They are firm friendswith young Laurie Shepherd, son of Rachel andMark.

As Claire explains:“The boys were allfar too busy havingfun!” This is why wecan only pictureHarrison with LaurieShepherd lookingserious. Oliver wasjust disappearingoff to the right ofthe photo!

3

At the Christening

Louise Fox writes to us fromAddlestone in Surrey:I wanted to let other people know about something Ihave just discovered. Iclaim carers allowancefor looking after mydaughter Gabriella whohas VACTERL and agastrostomy. Last year Ihad a big tax billafter declaring Carer’sAllowance. On allcorrespondence fromthe DWP it states thatCarer’s Allowance istaxable. This year I gotan accountant to domy tax return and aftersome investigation shewas told that becauseI care for a minor, I amexempt from payingtax on the allowance.This information is not onany correspondence I have ever had and I wonder howmany other parents may be paying tax on itunnecessarily.

Thank you for that helpful information, Louise!Members, don’t forget that both the Autumn ’09and Winter ’09 issues of Chew include informationon benefits.

The proudest mumin BritainElizabeth Langridge recently wrote to us fromKent, signing off with the great title of “Proudestmum in Britain”. We don’t blame her! She tells usthat her son Connor, now aged 14, has justachieved excellent status in his black belt inTaekwondo kickboxing! She says: “Who wouldhave believed he is the same baby who was bornwith so many problems? I am so proud of all hehas achieved. It’s not always been easy but henever gave up.”

Connor has overcome the challenges of being bornwith TOF and heart problems, ADHD, Aspergersyndrome and Dyslexia. Elizabeth tells us that nextyear he will be getting his full black belt after his sixmonths probationary period, as well as doing workexperience with his Taekwondo School for his GCSEs!Apparently he’s planning to gain his nextqualifications and hoping to become a TaekwondoMaster one day!

Elizabeth adds:“Connor is in Gifted for Art and is top in Science andadditional science and maths. As his mum I could notbe prouder of him. It just goes to prove disabilitiesonly hold you back if you let them. Many thanks foryour support over the years. I know we couldn’t havegot to this point without all the help and support wehave had.”

Carol Johnstonewrites fromDunbartonshire,Scotland:

I nominated my five year olddaughter Eilidh for a competitionon the local radio to win a trip toLapland. I had to write a letter tonominate her and did so as herbrother, Reilly aged 16months, is aTOF and has taken up a lot of ourtime since he arrived in September08. We didn't think we had a hope ofwinning and Eilidh was delightedthat her brother won it for her and

she got to have girlie time with mum. What afantastic experience. Our little man is doing well. Hehad a bumpy summer needing four stretches, butseems to be settling down. Barring all naturaldisasters, they don't need to see him for six months.Fingers crossed.

Family Update

Gabriella and her new sister Abigail!

4

Little JosephThank you to Sarah Clapson who shared withus the story of her little boy, Joseph TerenceClapson-Watkins. Joseph was born withDown’s Syndrome and TOF on 30 April 2009.He was also found to have a number ofadditional health issues, unrelated to TOF. Lateron Joseph was diagnosed with Pseudomonas,an infection in his blood. Sadly Joseph passedaway due to Pulmonary Hypertension on 7August 2009.

“Joseph was so loved by us all, and everybody who knewhim. He spent his short precious life in NICU, and thebrilliant staff there all loved Joseph and became ourextended family. We also met other parents whobecame friends I will never forget. Joseph had a bestfriend in hospital George. George is also a special babywith TOF – he was with Joseph every step of the way,and I am sure Joseph is watching down on him now. Ihope Jamie and Joe will be reading this article,remembering the happy and sad times we shared lastsummer.

I miss and think of Joseph every day of my life, butbecause of him my world has turned around. I am nowdoing voluntary work with children with disabilities, andhave become a PA/Carer for a boy with autism. I ammoving away from my career in the Home Office (after23 years) to work with children and families withdisabilities. Joseph has opened up a new world to me,and I owe it to him to give everything I can to helpothers. Thank you, my precious darling baby boy.

My daughter Paige has promoted the TOFS charity at herschool (Dover Grammar School for Girls) and they raisedmoney at Christmas from a cake sale. I am also raisingmoney for the Down’s Syndrome Association, NICU(Lewisham Hospital) and of course TOFS. I learned somuch from you, and about our special children with thiscondition. My family and I are currently organising acharity party event in memory of Joseph’s first birthday.There will be a raffle, disco, guess the name of the teddyand guess how many sweets in the jar. All the moneyraised will be shared equally between my three charities.We will always continue to support and be involved asthese make up some of my memories of Joseph. I thinkof you all as lifelong friends.”

Claire Burnside writes to us fromNorthern Ireland:My daughter Olivia (pictured on front cover) wasborn on 30th November 2006 with Long Gap OA.She was an in-patient at the Royal Belfast Hospitalfor Sick Children for almost nine months beforebeing discharged home on 8th August 2007.

Olivia's first operation was to have a gastrostomy tube placed forfeeding when she was two days old. She had all the normal teststo check for related conditions and problems and was found tohave 13 pairs of ribs, and a PFO, which had closed over by the timeshe was nine months. She also had a narrowing of her left nostrilwhich required two stretches, and a tongue tie that requiredsurgical correction. Olivia also has a turn in her eyes which mayrequire surgical intervention when she is older. Olivia also has aBicuspid Aortic Valve that was not diagnosed until she was a yearold and had been missed due to her small size (1.9kg) at birth.

Olivia had her first thoracotomy at two months on 1st February2007, for a planned repair. However, her surgeon said that therewas too much tension in the join and it would have beendangerous as any anastomosis would have torn apart, so at thatpoint she placed a Foker stitch to place tension on each end of theoesophagus and planned a repair for one month later (see glossaryon page 7 for definitions).

Olivia had a very unstable period of several months whereby shewas having life-threatening episodes on a daily basis. Reflux wasa major problem and main contributory factor in this, as well astracheomalacia (see glossary on page 7 for definitions). Olivianeeded intensive care for this period. There was anothercontributory factor that was figured out by Olivia's amazingsurgeon. It appeared that Olivia could no longer swallow her saliva,with some suggesting she had forgotten how to swallow, but itturned out that her gastrostomy tube was blocking her stomach asit was so small. Her surgeon removed the tube and placed just asmall nasogastric tube with no balloon device in its place, andOlivia was again able to swallow her saliva. Jejunal feeds werethen commenced very slowly.

When Olivia was seven months old she had a Nissen’sFundoplication. Afterwards, her reflux continued to be a problem,but not to the same extent and the life threatening episodesstopped. Olivia has now been diagnosed with asthma. Howeverthe more I learn about her condition I wonder if she really doeshave asthma or is it just related to reflux/OA.

As Olivia had a total aversion to feeding I had to do intensive workwith her in his area, starting with oral exercises then moving on topureed food. She has made amazing progress in this area and Iknow it's because I took a career break and have spent 24 hours aday with her, pushing feeds to normalise this everyday event.Olivia recently went through a period of about ten monthswhereby she was getting stuck on everything, even things shecould normally manage well. She had no stricture and it wasdifficult to understand why this was. It was following a dentalcheckup when the dentist saw evidence of acid erosion that thingschanged. Olivia had been weaned off Omeprazole andDomperidone, and when her Omeprazole was reintroduced, thestucks stopped within a week and she could eat again.

Olivia has needed a lot of loving care and understanding. In thefirst couple of years she would get very traumatised by normaleveryday things. She was very clingy and unsure of herself andwouldn't let me out of her sight. It is only now that she is moresecure and willing to stay with other people.

I think it's great to have any literature about Oesophageal Atresia.There is a real gap and lack of understanding with other doctors,especially paediatricians. I feel that Olivia's surgeon is the only onewho understands her and my knowledge of her conditionsurpasses that of the other doctors who treat her during hospitaladmissions.

5

A bouncing two year old

Philip Gudge wrote to us with anupdate about his son Tiago whowas diagnosed with TOF shortlyafter he was born on the 14thMarch 2007. He starts bydescribing how the family felt afterTiago’s diagnosis:

What had been the best day of our lives had turned intothe biggest nightmare we could have imagined.However, the NHS rolled into action, and by lunchtimethat day Tiago and my wife were in Brighton at theThomas Mann Unit. The surgeon, Miss Aviort,performed the operation on Tiago on the Friday.

Two weeks later we were on our way home with a littlebaby boy, two very worried parents and an assortmentof other worried relatives all feeling very much on edge.The staff and Miss Aviort were wonderful, but nothingprepares you for looking after a baby for the first time,especially when they have just had an operation.

My wife then picked up a copy of Chewwhich offered usthe ray of hope we had been looking for. Me, my wifeand our parents are avid readers every time themagazine arrives. We are extremely grateful for thesupport that this publication offers.

Tiago is now a bouncing/running two and half year old,who is running his parents ragged! The last two yearshave been an emotional journey that we hope no oneelse has to go through, but if they do, we hope TOFScontinues to provide the support and hope that isneeded.

Thanks for sending the newsletter…it has certainlyhelped us see the light at the end of the tunnel.

EVENTSAGM and TOFS Children’s party!It’s party-time again! Our annual children’s party is agreat opportunity to meet up and share experiences withother TOF families. This year’s event will take place onSaturday 9th May. We’ve planned it on the same day asour AGM so please attend that as well and make a dayof it. The AGM is at 12 noon and children’s party 2-4pm.We’ve booked the play area so children can play from 1-2pm so you can attend both AGM and the party. Thanksto new co-opted member Gill Jackson, we’ve got a greatnew venue this year – Rosliston Forestry Centre, BurtonRoad, Rosliston, Swadlincote, Derbyshire DE12 8JX.(www.roslistonforestrycentre.co.uk) Directions areavailable from the Forestry Centre website – or you cangive us a call at the office (0115 961 3092).

We can promise lots of TOF-friendly food, a large playarea for the kids to spill out into (weather permitting),and some great walks around the forest with paths andtrails for all abilities should you wish to make a day of it.A circus skills workshop with Magical Mayhem will givethe kids an opportunity to get stuck in and have funwhilst you meet and chat with other TOF parents.

We don’t have the resources to post invites to everyone(just those within easy travelling distance) but you’re ALLinvited. As numbers are limited, please give Jayne orDiane a call as soon as possible to book your space. Costis free to parents – funded by TOFS.

TOFS eventsAGM (12 noon), and children’s party (2-4pm)Rosliston Forestry Centre, Burton Road, Rosliston, Swadlincote,Derbyshire Saturday 9 May

Council of Management meetingsSt. George’s Centre, NottinghamSunday April 25 2010Sunday June 27 2010Saturday Oct 9 2010Sunday Jan 9 2011

Cariad Astles writes from Exeter:My son had a gastric transposition seven years ago.There have been various effects from the operation, bothpositive and negative. One thing is that he burpsfrequently and these burps are very smelly. As hisstomach is near his throat and he has no stomach valve,I guess there is nothing to prevent the smells comingout, and they are very unpleasant. He is now nine andthis is becoming a social problem, with children in hisschool commenting on it and telling him he stinks etc.It's upsetting him quite a lot. I have never read anythingin the newsletter about this problem. Can you advise?

Can you help Cariad? Please contact her via theTOFS office.

6

Feeding a new TOF/OA child –parents’ top tipsThe TOFS Conference in October 2009included a session on feeding a new TOF/OAbaby. Thanks to all the parents who shared theirexperiences. Here are some of their ideas andtips:

“Steamed vegetables (pureed) a

nd a Heinz

Cook or home sauce and let the

m get on

with it!” “Share the feed times.”

“Only offer one meal choice. If he/shesays no, don’t offer anything else – itsaved my sanity.”

“Be led by them– don’t worry.”

“Coca-Cola helps every time.”

“Try chocolate buttons.”

“Know responsibility –let them choose –don’t push.”

“Don’t get stressed. Don’tcompare your child with otherchildren.”

“Be patient with each feed.”

“Encourage your childto eat with others.”

“Choice”

“Little and often”

“Don’t compare

with other

‘normal’ childre

n.” “Eat as a family(all together)”

“Make it fun. Foodis fun”

“Don’t force the issue.”

“Sit together as afamily – play with food.”

“Be patient at each feed.”

“Celebrate a spoonful!”

“Don’t compare your own childwith others.”

“For a child who is able to eat(i.e. good oral feeding skills)dissolve meds in fruit puree.”

“Persevere and do frequent expressingof milk/bottle feeds morning andnight, however many times.”

“Eat little andoften”

“Patient parents:don’t worry if theytake a long time tomove on from stage1 foods to stage 2”

“TOF children develop atvery different paces…”

“Don’t stress! Thingswill get better….”

“Let them eat what they want!i.e. foods that work.”

“Moisture i.e.gravy/sauces”

“Sips of water”

“Eating withothers – in cafes,school etc”

“Access toa drink”

Happy Birthday to all our children who havecelebrated a birthday recently. Our birthdayfairy has been sending out cards to all of youunder the age of six. And congratulations tothose of you aged six and over in March, Apriland May

Members’ birthdays in March, April andMay – 6 to 16 years

Mia Bradbury 13-Mar-02 Reece Causon 09-Mar-94Jordanne France 07-Mar-96 Olympios Gougoulias 06-Mar-02 Gemma Harper 29-Mar-95 March Hollingbery 08-Mar-97 Amy Howes 23-Mar-97 Lauren Hulligan07-Mar-01 Pippa Hynes 08-Mar-97 Megan Kilby 13-Mar-99 Megan Knox 07-Mar-99 David Malcolm 11-Mar-99Holly Martin 15-Mar-03 Jack Mullens 12-Mar-97 LaurenNaylor 21-Mar-03 James Rogers 26-Mar-03 DanielSandford 28-Mar-00 Ben Smith 03-Mar-04 Grace Walsh06-Mar-03 Lukas Weber 09-Mar-03 Huw Williams 26-Mar-94 Jack Berry 09-Apr-96 Phoebe Cannetti 10-Apr-02 Alyssa Ciambelli 26-Apr-95 Joe Francis Cooper20-Apr-01 Andrew Day 12-Apr-99 Robert Doward 17-Apr-98 Megan Evans 18-Apr-96 David Fenton-Smith 26-Apr-99 Zijian Guo 10-Apr-03 Daniel Heath 19-Apr-96Miriam Holland 03-Apr-01 Samuel Holleron 30-Apr-01Samuel Mullins 18-Apr-00 Bradley Newman 11-Apr-00Lucy Robson 26-Apr-97 Charles Shotton 25-Apr-97Phoebe Smith 29-Apr-97 Thomas Smith 19-Apr-96James Soper 25-Apr-98 Kimberley Taylor 25-Apr-01Laura Thompson 18-Apr-98 Caspian Tyrer 18-Apr-95Charlotte Underwood 03-Apr-94 Luke Bowron 31-May-94 Emma Brown 11-May-94 Jordan Clifford 24-May-96Robert Corbett 19-May-03 Matthew Flynn 19-May-96Lois Gale 23-May-03 Charlie Gough 11-May-99 Stephen-Thomas Gray 17-May-97 Anna Rose Greco 05-May-98Matilda Green 10-May-00 Jac Griffiths 03-May-03Steffen Hansen 26-May-95 Callum Hillman15-May-94Judy Kingham 01-May-01 Eilidh Latimer 15-May-97Connor Middlehurst 15-May-96 Victoria Mince 01-May-98 Tudor Morgan-Huggett 23-May-95 Nicole Morley 31-May-99 Bethany Randle 30-May-94 Isobel Shorrock15-May-02 Sophie Smith 10-May-95 Kristopher Spender26-May-95 Michael Webster 25-May-95 Charlie White10-May-98

Happy Birthday

7

First international conference onOesophageal AtresiaMay 27-28, 2010 - Lille, FranceThere is still time to book on this event which aims to address themost up to date issues in the field of Oesophageal Atresia. It willbring together European and North American specialists and covera wide range of themes including epidemiology, neonatalscreening, surgical challenges, digestive and ENT/ respiratoryaspects. The conference will also include sessions about the role ofpatients’ associations led by TOFS Trustee Graham Slater. TOFSoffice manager Diane Stephens will also be attending the event.

You still have time to register online at:www.esophageal-atresia2010.com

If you can’t attend, you can find out about the conference indetail in your Summer or Autumn Chew with reports from Dianeand Graham.

TOFS community onlineThe TOFS community is an online forum that allows TOFparents, carers and others to make contact with each other.With the number of total posts nearing 4,000, this is a greatresource! We’re delighted that the forum continues to be asource of information and inspiration for families and others.It’s also wonderful to see that, as well as online connections,real-life friendships have sprung up from the forum!

The issues under discussion vary widely! At the time of writing,the threads that have received the most views and responsesinclude:� Disability Living Allowance� Two year old OA not eating – any advice?� Anyone else have one twin with TOF and the other not?� Achievement thread (sharing children’s achievements)� Decision to make – Nissen’s fundoplication

You can find out more by going to www.tofs.org.uk andclicking on the ‘TOFS Community’ tab.

GlossaryDefinitions of technical and medical terms mentionedin some of our articles and family updates.

Anastomosis:a join where the two ends of the oesophagus are stitched together.

Gastrostomy:a surgically-created connection between the inside of the stomachand the body wall.

Gastrostomy tube:a tube that allows a child to be fed directly into its stomach.

Jejunal feeds:feeds made through a jejunostomy tube, a specially designed tubethrough which a child can be fed. The tube is inserted through theskin, and then runs either directly into the jejunum (a part of theintestines which lies a little way after the stomach) or into thestomach and then on into the jejunum.

Nasogastric tube:often called an ‘NG tube’, this is a specially designed tube throughwhich a child can be fed. It enters through the nostrils, then runsdown the back of the throat into the oesophagus (food tube) andon into the stomach. Liquid food can then be given to the childthrough the tube, directly into the stomach, avoiding the need forthe child to swallow.

Nissen’s Fundoplication:this procedure is commonly used to reduce Gastro-OesophagealReflux (GOR). The lower oesophagus is freed up and the top partof the stomach (known as the “fundus”) is wrapped around thelower oesophagus to make a valve at the junction of theoesophagus and stomach. The hole in the diaphragm throughwhich the oesophagus passes may also be tightened.

Reflux:Reflux or Gastro-Oesophageal Reflux is when the acidic stomachcontents pass back into the lower oesophagus, which can causepain, a reluctance to eat and possible problems in later life.

Thoracotomy:surgery that involves an incision into the chest.

Tracheomalacia:floppiness of the trachea (windpipe).

VACTERL:this acronym describes a group of anomalies which often occurtogether in newborn babies: Vertebral (spinal) defects, Anorectalatresia (failure of the anus and lower end of the gut to form),Cardiac (heart) defects, Tracheo-Oesophageal fistula with orwithout Esophageal Atresia (American spelling of ‘oesophageal’).Renal (kidney) anomalies and Limb defects.

Interested in a conference foradult TOFs?Following on from the recent report from GrahamSlater on the possibility of holding an adultconference, member Sophie Smallwood has kindlyagreed to help us organise it. She has made thisappeal on our website:

“Just to let you know a potential date and place have been setfor the adult conference. It is to be held in October 2010 inSolihull, Birmingham. The exact date will be confirmed on theTOFS website and on Facebook. It would be really helpful ifpeople interested in coming could respond on this forum. Thevarious subjects for discussion are ongoing health problems, atalk from an adult thoracic surgeon, a respiratory specialist,hopefully a nutritionist/dietician and a geneticist.

The conference is being arranged so that adults who haveTOF/OA and related conditions can gather together to discusstheir experiences and have a chance to ask questions that theirown doctors cannot answer.

We are hoping that, if the conference is successful, one can beheld on alternate years, just as the main TOFS conference is.One particular aim is to develop a database of doctors andother medical specialists who are interested and haveexperience in caring for adults with TOF and related conditions.As more of us become adult and leave the care ofpaediatricians it is often difficult to find GPs and consultantswho understand our condition. The creation of a database willmake it possible for medics treating adult TOFs to gainspecialist information regarding the care of that person.So, if you are an adult with TOF/OA or you’re in the medicalprofession and are interested in attending please respond tothis message.”

If you’re interested in going to the conference pleaserespond to Sophie’s message via the communityforum on our website or give us a call on 0115 9613092

We believe that this is largely due to a drop in thenumber of events that have been held to raise moneyfor TOFS. We don’t record that number exactly, but theTOFS accounts system recorded numbers of paymentsfrom members and friends’ fundraising events. Most ofthese are from events like cake sales, coffee mornings,sponsored runs, non-uniform days, and so on. As ourtable below shows, the large number of small paymentswe saw in 2007-8 (143 of less than £10) really fell awayto just 10 in 2008-9. And, more painfully, the number ofbig sponsored event donations really fell, from 6 in2007-8 to just two.

The budget set recently aims for member’s events toraise some £23,200 for TOFS in the Dec 2009-Nov 2010year. This is a modest increase of just 5% (when 200 clubis included) from Dec 08 – Nov 09. Given the economicsituation generally, it might be too hopeful to ask formore! But we know you have raised far more for TOFS inthe past, and we hope you’ll be able to do it again. Seeover the page for lots of fundraising ideas.

8

By John Pearce, TOFS Trustee

Times are hard – we all know that. TOFS is not theonly charity which has noticed a decline in its income.Chew always carries reports about people raisingmoney for TOFS and we are very grateful for theseefforts. But nonetheless the TOFS Council ofManagement feels a need to try to boost incomeagain – or we will have to seriously think aboutreducing the scope of what TOFS does towards theend of 2010.

Our accounting system enables us to look at eachmonth’s income and expenses. The charts below showincome for 12 months to a given month. So the April 09point, for instance shows TOFS’ income for the periodMay 2008 to April 09 inclusive.

For most of 2009, money was flowing in at around£55,000 per year, which is a little less than we wouldlike. The recent drop is rather worrying, however.

We split down the income of TOFS in four ways:membership, other donations from members,fundraising events, and grants from trusts. We do notreceive any money from local or national governmentbodies. The chart below shows that membership andother donations have been holding fairly constant. Butthe proceeds of fundraising events have clearly beenfalling. The big fall is because a huge event happened inDarlington in April 2008 – the proceeds were used tofund our autumn 2009 Newcastle conference. Howeverthe trend in members’ fundraising is clearly slowlydownwards.

TOFS income for past 12 months

0

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Total Income exc merchandise and conference

TOFS Income for past 12 months

0

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Grants Donations Events Subscriptions

Dec 07 - Nov 08 Dec 08 - Nov 09

Nos of "Events"payments by size ofpayment

£1 up to £9.99 143 10

£10 up to £99.99 76 45

£100 up to £999 58 67

£1000 up to £9999 5 2

£10000 or more 1 0

TOTAL 283 124

"Events"income (adjusted) £27566 £20824

Average"Event" payment £97 £168

Note: Adjusted income excludes the one exceptional 07-08 donation andour “200 Club” in both cases.

More coffee mornings please!

How YOU can help raisemoney for TOFSOur fundraisers are brilliant. They’re usually TOFparents, aunts, uncles, friends and even TOFsthemselves. Just look at what some of them have gotup to…

So many of you have done a fantastic job of raising moneyand awareness for TOFS - but we need more. This is howyour money can help…

� £5 will cover the cost of supplying one new mum anddad with an information pack.

� £15 will inform one neo-natal unit in a TOF hospitalthat a support group exists for parents and carers ofnew TOF babies.

Remember, the fundraising activity you organise doesn’thave to be elaborate – it just needs to raise money. Mostof the money we receive is from small events. Only two oflast year’s events resulted in donations exceeding £1000.Here are some more ideas. It’s an endless list, but ouradvice is to KEEP IT SIMPLE, STAY SAFE, and DO SOME-THING YOU THINK YOU’LL ENJOY.� Collections� Non Uniform Day - give a donation to be allowedto attend school / college in your own clothes.

� Job Swaps - We all feel at times we can do better thanthe boss! Auction the MDs / Heads of Departments /Cleaner's job for an afternoon!

� Fancy Dress - pay to go to work/school in fancy dress.� Guess the Baby competition - photos of the staff /colleagues as babies. Or ask your teachers to hold acompetition!

� Fashion show� Trivia quiz night- Pop / Sport / General Knowledge / etc� Car boot sale/Garage sale/Bring and buy stalls� Cake sale

9TOFS Conference Workshops� Coffee mornings� Open garden days� Raffles� Name the teddy� Dress down days/Bad hair-do days� Karaoke� Five / seven a side football / rugby / hockey / etc.� Sponsored walk/bike ride/silence/haircut/shave� Car wash

The list could go on and on! Visit our website forfundraising tips or call the office for a leaflet. Whateveryou are planning, keep it SAFE and LEGAL (moreinformation is available from our office) to help protectyourself and others at your event. And remember, everypenny counts. Don’t forget to give the office at call to tellthem what you are doing and for more help and advice butmost importantly – have fun! Then write or email us aboutyour achievements so we can share then in Chew!

ChristeningsYoung Daisy BlossomBuckley, who became oneour youngest fundraisers ather Christening in 2009 whenher family and friends raiseda fantastic £2,375 for TOFS!

BirthdaysHaving a party? Why not invite your guests to make adonation to TOFS in lieu of buying presents?

Getting married?You may also wish to invite your guests to donate to TOFSin lieu of wedding presents by sending a gift card or byusing donation envelopes.

A gift in your willEvery gift in every will makes a real difference. Supporterswho remember TOFS in their Will help us to grow anddevelop our services in response to the ever increasing need,creating a legacy that lasts long into the future.

We are enormously grateful for every gift we receive –whatever its amount. Each person who remembers ourwork in their Will becomes part of our history and, mostimportantly, our future.

A gift in memoriamGiving a donation to TOFS in memoriam is a special way tocelebrate the life of someone you have lost.

Corporate supportCould you help fund the next TOFS conference? Ask yourlocal mayor or other local money-raising organisations tonominate TOFS as Charity of the year or the month.Member Joanne Ansboro did this, and the money raisedwas used to host our following conference in her homeregion. We can give you support with this.

Could your company adopt TOFS as their charity?This could really help in securing our services forfuture families of children born unable to swallow.

Corporate and group donations

� Ophthalmos Lodge and Glenmore Lodge - £300raised at a joint Ladies Festival at Surbiton MasonicCentre.

� Mount Moriah Lodge - £500 (collected after theLodge heard about the difficulties of Tiago, son ofPhilip Gudge. You can hear more about Tiago onp5.)

� Form 11B of Dover Grammar School for Girls -£85.90 raised through cake and raffle sales - inmemory of little Joseph Watkins whose sister Paigeattends the school

� Jersey Trust - £48.10 raised at a dress down day� Newcastle West Probus Club - £50� Women’s Register Derby Group - £25 through ChrisLayne (Ben Bailey’s grandmother)

� St Augustine’s church - £560 raised at a Christmascoffee afternoon

� GlaxoSmithKline plc - £150 raised at the request ofKen Shadlen

� Lee Ann Fashions Ltd - £70 in lieu of sendingChristmas cards

� The girls in Frank House at Hitchin Girls’ School -£54.53

� Mark Davis of Mark Davis Opticians – £87.50

FundraisingThank you for your donations, especially all thosemembers who keep on working quietly for TOFSyear after year. We’d like to thank:

� Dorothy Shallcross - £55� Mary White (grandparent to Isobel Winspear) - £30� Mrs J Earl (grandparent to Frazer Earl) - £50� Mrs Rouse (grandmother to TOF baby BarnabyMacdonald) - £25 raised with a table top sale

� John and Chris Layne - £88� Pat Jacobs - £10� Mrs Nellie Hayes (grandmother to Nathan Ayling)- £200

� Joy Howell (grandmother to adult TOF Colin Ryan) -£20 donated in lieu of sending Christmas cards

� Judith Bland - £25 donated in lieu of sendingChristmas cards

� Kathryn Doody - £25� TOFS Patron Leela Kapila - £300 donated from alecture given to Medilink

� Lee and Sarah Harris - £200 raised at theirdaughter Rebecca’s Christening

� Jeremy Leverton - £25 CAF donation� Mr and Mrs Faulkner - £30 CAF donation� Mike and Pat Westbury - £10 sent by one of theirfriends in lieu of sending Christmas cards

� Julie Molyneux - £31.54 collected from Webb Ivorysales

� Alison Pressey and Sue Luff - £185 collected fromWebb Ivory sales. (Alison and Sue have raised over£3500 through Webb Ivory sales since 1985! Thankyou both!)

� Michael Levy - £50 Justgiving donation followingthe birth of a baby boy, Leon, to Danny and AlexDenton

� Edward Beaumont - £100 donation at the requestof David Griffiths who celebrated his 60th birthdayalong with £307.69 donations through Justgiving

� Graham Slater - travel expenses donated back toTOFS

� Kay Leech - monthly donation of £9 set upthrough Give as you Earn.

� Lynette Lowe, grandmother to Ryan Lowe raised£270 by organising a coffee morning and bric-a-brac sale

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200 Club winnersOur latest winners are:

November – Michelle SlackDecember – Caroline AinleyJanuary – Judith Bland who very kindly donated herwinnings back to TOFSFebruary – Christine Silvain

Want to be in with a chance to win? Contact theoffice for details on how to join our 200 Club!

Gifts in celebrationIf events aren’t your thing, then how about a ‘gift incelebration’? Christenings, weddings, birthdays andanniversaries are times for celebration and giving gifts.However, nowadays many of us already have all thematerial possessions we need and are seeking alternativeand worthwhile gifts...

11

Going the distanceCongratulations to mum Emma Johnson, who raised justover £1000 for TOFS by taking part in the Adidas Women’s5K Challenge last September!

I have wanted to take part in a fundraising event for a longtime and I finally signed up for the Adidas Women’s 5KChallenge, which took place on 6th September.

Our son Jack (who is 3 and a half) was born with TOF/OA andhas faced many challenges in his short life. My husband Davidand I have found TOFS to be a fantastic support. It hasprovided us with a wealth of knowledge and information.

I am not a runner but trained throughout the summer for therace. When race day came the atmosphere was fantastic. As17,000 women lined up I felt very emotional and delighted tobe taking part, raising money for such a worthy cause.

I really wanted to run all the way, but didn’t have a goal timeas I hadn’t done anything like it before. The klaxon sounded,the adrenaline kicked in and we were off. Just after the startline I passed David, Jack and Tom (Jack's 18 month old brother)cheering me on. Seeing little Jack was all the motivation Ineeded and continued to jog around the course. In between 3Kand 4K my legs were tired but I just thought of Jack cheeringme on and started running again. As I hit the finish straight,there was Jack giving me a final cheer and I crossed the finishline in 36 minutes with a big smileacross my face.

My family and friends have beenamazingly supportive andgenerous too. It really has meantso much to me and I am delightedto donate just over £1000 toTOFS.

Something special for ChristmasClaire Cooper-Jones (also featured on page 3) wrote to tell usabout a Christmas event that helped to raise funds for TOFS.We were especially interested to hear about the specialshepherds!

Our local church did a special Christmas Eve service. Thekids dressed up, and we all went knocking on doors askingif there was 'room at the inn'! (Pre-arranged, I should add!).We ended up at the local farm, where the farmer's wife toldus we could stay in the stable! We sang carols and Maryand Joseph put their baby in a real manger. Two veryspecial shepherds came to see baby Jesus! (i.e. our twinboys Oliver and Harrison). At the end the Vicar askedeveryone to donate to her chosen charity - TOFS! We raised£70.

A positive cycleEmma Dyson wrote to tell usabout the fantastic efforts ofher husband, Paul who raised£274.54 for TOFS by takingpart in the Tour de Furnesscharity cycle event lastSeptember. His team mates,fromMillom Rotary Club, helped to raise an additional £152.50.

Emma says: “Our daughter Millie Angel, who is now four yearsold, is a TOF child. She had an ‘H’ type fistula which wasrepaired when she was a few days old at Leeds GeneralInfirmary.”

Thank you to Paul and the Millom Rotary Club for theirsupport!

A bright sparkWe love hearing your fundraising news, but here’s one storythat gave us a particularly warm glow! Nikki and Mark Ayling,mum and dad to TOF Nathan wrote to tell us about the NevilleJuvenile Bonfire Society. This group, based in the Aylings’ hometown of Lewes, East Sussex, fundraises throughout the year toput on a torch lit procession and big firework display forchildren around the October half term. (More info atwww.njbs.co.uk).

Nikki says: “Both my husband and I have been active membersof the NIBS committee for 16 years and having had a sonNathan (born 11/11/02) with TOF and other associatedproblems, we requested that TOFS be one of our streetcollection benefactors. The committee were happy to oblige.

Nathan, now aged seven, has become an active member of theteam and helps with the tableaux and effigy construction andpainting. This year he helped the society replicate the housefrom the Disney film Up and create an effigy of Guy Fawkes –as well as dressing up as a sailor for the procession!”

The happy chefsThank you to Sarah Tiffany-Dodman who was inspired by oneof our TOF families to raise money for TOFS. Sarah is friendswith Jody Margerison-Buckley whose daughter Daisy was bornin November 2008. In October Sarah put on a specialPampered Chef evening for 16 of her friends (including Jody).Sarah’s six year old son, Alex also took part! The happy chefsraised a total of £60.49! Sarah also kindly donated hercommission from the totalsales figure from the evening.She says:

“I know how much Jody andher family have appreciatedthe support of your charity sowas glad to help in this smallway.”

Taking auction for TOFSLast year Maggie Earl wrote to tell us about the fundsraised by her TOF son Frazer, his sister Tabbie and theirfriends by carol singing. Apparently the kids weren’t sokeen on carolling this year so the family held a partyand a ‘silent auction’ instead.

We gathered some stuff together and after a few mulled wines,got neighbours and friends to bid on such treasures as a carwash by Frazer, beauty treatments by mum and photosdonated by Uncle Andy Earl/photographer to the stars! Ienclose a cheque for £153.75 and hope this will go some wayto carrying on your support for another year.

TOFS office staffed:

Monday: 8.30am - 1.30pmTuesday and Wednesday: 8.30am - 3.00pmThursday and Friday 8.30 - 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.

Make contact with other TOF families!Would you like to meet more TOF families? Want to share some ofyour experience with a new TOF family? We’re looking for peopleinterested in getting in touch with new members and organising gettogethers. It’s a great way to make new friends and help new TOFfamilies. We’d love to hear from you. Please contact the TOFS officefor more information.

TOFS in hospitalsWe are very grateful to members who have been helping to distributeTOFS posters in their local hospitals. But we need to make sure thateven more hospitals feature information about TOF/OA. We know thedifference the right information at the right time can make to parentslearning that their child has TOF/OA. If you would like to help, pleasecontact the TOFS office to request your posters.

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)

Council of ManagementHon. Chair: Gren ShepherdHon. Vice Chair: Duncan JacksonHon. Treasurer: Sandra HawkinsHon. Secretary: Graham SlaterChristine ShepherdSue Lewis-JonesDennis HarveyJohn PearceGill Jackson: Co-opted member

Office personnelOffice manager: Diane StephensAdministrative assistant: Jayne Allitt

The views expressed in Chew are not necessarily those of the

editor or the Council of Management.

Graham Slater, SecretaryThe Council of Management held its firstmeeting of 2010 on Sunday January 31st.As usual we had a lively meeting with abusy agenda which included:

� Our financial position and in particularthe need to establish a viable budgetfor our coming year’s activities. Incommon with most of the voluntarysector we face the financial pressuresresulting from the recession; youcan find more on this topic in an article writtenby trustee John Pearce on page 8.

� The possibility of holding a conference later this year for adultTOFs. Many adult TOFs face some specific issues which includethe transition from paediatric to adult medical care, nutrition andspecific conditions that arise in the adult TOF population. TheCouncil is conscious that we have a growing number of adult TOFmembers and that, of course, TOF children become adult TOFs. Itseems sensible therefore to consider how we can better supportour adult TOFs. We will update you in the next issue of Chewshould we decide to proceed with such a conference. In themeantime if any adult TOFs have ideas on the topics that mightbe discussed at such a conference please let us know via theTOFS office.

� The first European level medical conference on TOF/OA whichwill be held in Lille, France in May. In addition to medicalpractitioners from Europe, and other countries notably Canadaand Australia, support organisations have been invited via AFAO(the French equivalent of TOFS). The conference speakers includeone of our medical patrons Lewis Spitz. The support organisationsalso feature on the conference agenda and have been invited tomake a presentation on their role, objectives and the issues weface. This presentation will be led by one of our trustees GrahamSlater, who will be speaking on behalf not only of TOFS but of oursister organisations in Europe. We will have a report on thisconference either in the summer or autumn issue of Chew.

� Gill Jackson was co-opted on to the Council of Management atthis meeting.

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