Hello, my name is Ayden. I’m a little different from other children my age, but that doesn’t mean the love and happiness I have to give is any less than any other child of my age. You see, I’m disabled, but mommy sees me just as differently abled.I don’t eat or drink anything. I have an eating aversion. Because of this my emotional and physicalgrowth is very impaired. I’m not gaining enough weight because Mom has to feed me through atube in my tummy. It’s like being on a non-stop liquid diet. I don’t even like sweeties or juice – I’mscared swallowing will hurt. I’m struggling to form certain sounds because the muscles in mymouth is underdeveloped. With eating and drinking to develop these muscles and a bit of speechtherapy afterwards I will hopefully be talking nonstop one of these days. Mommy has been tryingwith various therapists to get me to eat for the past five years. But fortunately Mom heard of thiswonderful hospital in Austria, Graz, specialising in eating aversions. They have been dealing witheating aversions for over 20 years and have helped a lot of kids like me to eat and drink like normalchildren. Our plan is to go there next year in June (2013). But now we need all the help we can get. We needfunds for the trip, the hospitalization , flights, medication etc. which amounts toR250 000.Mommy started a Trust for me for this trip. She has an accountant helping her, the Trust isregistered with SARS and will be audited by the accountant.Please help in any way you can. Me and Mommy would really appreciate it. If you make a directdeposit please put your email address or cellphone number as reference as we would like to send athank you and any progress on my journey on eating.I’ve included a letter to give you a background of my life so far. There’s also some information onthe hospital in Graz if you would like to read through it as well as some documentation of successcases of kids around the world. Lastly I’ve put some information on the hospital in Graz. They’vewon numerous awards for helping children like me. Trust Details are as follows (Trust Number: IT455/12) Trust name: Special Needs Support Trust FNB Southern Centre Branch Code 250655 Acc nr: 62361597217 SWIFT CODE: FIRNZAJJ Email address: firstname.lastname@example.org
Copied from The hospital’s website to explain Tube dependency:The “normal” childLearning to eat is a normal process in a childs development. This process needs common senseand a basic set of parental skills in sensitivity, cue reading, commitment to want to feed and anengagement for the childs growing sense of autonomy and self-competence.The “special” childHowever, when a baby is born prematurely or suffers from a physical anomaly needingimmediate surgical intervention or is suffering from any other severe pediatric disorder, thenthings are all different. Suddenly the essential developmental step of learning to eat is failing todevelop normally. Thus a feeding tube is often given to the infant or child. Subsequently the childmight become tube-dependent – a problem arising from a lack of an exit plan.How does tube dependency develop?The feeding tube, initially inserted as an intervention intended to temporarily help the childthrive under extreme conditions, is a device which helps initially but makes patients dependent.As a consequence, many who became dependent on their tube, never learn to eat and showdistinct food refusal and avoidance patterns, leaving both child and family with traumatizingchallenges and a significant financial burden.What exactly is tube dependency?Tube dependency is a distressing and unintended result of tube feeding in infancy. The conditionof tube dependency can be defined as active refusal to eat and drink, lack of will to learn or theinability and lack of motivation to show any kind of precursors of eating development and eatingand drinking skills after a period of enteral feeding. It is often characterized by overt disinterest,food avoidance and active refusal, gagging, vomiting, oversensitivity, fussiness and otheroppositional and aversive behavior. It may influence the quality of life of the affected infants andtheir families to such a degree that all other troubles fade into oblivion besides the nightmare of achild who will not eat or drink and does not thrive even when enterally fed. Nevertheless, tubedependency is until now not recognized as a problem by many pediatricians. These children arereferred to as children with feeding disorders/children with early eating behavior disorders.
---------- MY LIFE ----------I was born on 27 April 2007. Mommy struggled for five years to fall pregnant, so we decided thatwe’re not going to make her wait for us the whole nine months. So at 29 weeks me and Kyle madeour appearance into her life. I think it was the happiest day in her life, but we decided to be a bitnaughty and played a few tricks on her. Because we were born so small (I weighed 1088g and Kyle1140 grams) our lungs needed a little help to breathe. We were put on a thing they call an oscillator.36 hours later my one lung couldn’t handle the pressure of the machine and it started bleeding.Luckily the wonderful doctor decided to fight for my life for a whole three hours and with the helpof all the angels watching over me I survived, but that meant the start of a very long journey for mywhole family.I needed some more help breathing after that – so I was ventilated for seven months. I stayed inhospital for 9 whole months and enjoyed all the attention, but I could see mommy got very stressedand tired of me not being home. Kyle went home after three months, but mommy and Kyle came tovisit me every day in hospital. Because of my damaged lung I had to be on oxygen until my firstbirthday.
Sick after an operationWhile in hospital I underwent operations on my heart, my bowel, my tummy and they took mytonsils out. I also suffered from reflux, but after a Nissens operation I felt much better and couldkeep my food in.Although the ventilator kept me alive it hurt me very much, so I decided that I won’t swallowanything anymore. The doctor decided to give me a Mic-Key. It is feeding tube directly into mytummy delivering all my nourishment and liquids. Mommy makes special foods and they feed mefive times a day. My Mic-Key
Currently I’m in a special needs school in Bloemfontein were they teach me a lot of new things. Wesing, paint and I play with my friends. They also help me with my sensory integration problemsthere. Here is a photo of when we celebrated my fifth birthday at school. Because I’m not eating, I’mnot growing as fast as other kids – I’m a bit small and emotionally I’m like a 2 year old. I alsostruggling forming certain words because my muscles are underdeveloped. They need somepractice – all with eating and drinking. Celebrating my fifth birthday at school
Mommy has been taking me to therapists to try and help me realize that eating or drinking doesn’thurt, but I am a bit stubborn on that issue.So mommy saw on Carte Blanche Medical that there is other kids like me – they call it an eatingaversion. There is a special kids hospital in Austria specializing in tube weaning babies and childrenwith feeding disorders. (http://www.notube.at). There’s about fifteen South African parents thatalready went to Graz. So mommy needs to raise funds to take me there. Kyle showing me how to play with a car I’m the one in blue .
Courant Artikel‘n Lewe sonder kosWednesday, 25 July 2012 11:27 Marinè JacobsMariné JacobsAyden Potgieter se verhaal is een wat selde gehoor word. Hy is ‘n gelukkige, blondekopvyfjarige van Bloemfontein, maar hy het nog nooit geëet het nie. Ayden ly aan ‘n seldsame eet- eetaversie, wat beteken dat hy ‘n onoorkombare vrees het om te eet of te drink. Ayden en sytweelingboetie Kyle, is op 27 April 2007 gebore, ‘n volle 11 weke te vroeg, vertel maMarquerite. Ayden het slegs 1 088 g geweeg met geboorte en Kyle net ‘n rapsie meer op 1 140 g.Albei is dadelik ná geboorte met asemhalingsmasjiene gekoppel omdat hul longetjies so kleinwas. Kyle het vinnig vordering getoonen sterker geword, maar Ayden se lyfie het gesukkel. “Een van sy longe het na slegs 36 ure op gesukkel.die masjien begin bloei en hy moes vir ‘n verdere sewe maande geventileer word,” sêMarquerite. Ayden moes ook operasies aan sy hart, sy derms, maag en mangels ondergaan.Ongelukkig het Ayden onomkeerbare breinskade opgedoen ná al die trauma waardeur sy lyfie breinskadeis. Hoewel die ventilator Ayden se lewe gered het, het dit hom geleer om nie te sluk nie. Hymoes ‘n “mic-key” ontvang - ‘n pypie wat direk in sy maag ingaan, waardeur Marquerite homkan voed. “Hy moet vyf keer ‘n dag gevoed word en ek volg streng hoeveelhede wat deur ‘n fdieetkundige bepaal is,” vertel Marquerite. Sy verduidelik dat Ayden nooit honger word nie.“Omdat hy nog nooit geëet het nie, het hy nie daardie begrip van die ‘honger gevoel’ gaan weg ‘honger-gevoel’as ‘n mens eet nie.” Eindelose terapie en mediese aandag was tevergeefs. Ayden weier om teeet. Ayden is besonder klein vir sy ouderdom en sy ontwikkeling is ver agter. As vyfjarige kanhy steeds slegs ‘n paar woordjies sê, glad nie met speelgoed vir sy ouderdom speel nie en loop ouderdomhy nou eers ‘n jaar. Hy is tans in die Moné skool in Universitas, Bloemfontein, ‘n skool vir Moné-skoolkinders met spesiale behoeftes. Daar is egter hoop. “In Oostenryk is ‘n mediese sentrum watkinders met ‘n eet-aversie weer leer om normaal te eet,” vertel Marquerite. “Dit neem vier tot vyf aversie normaal
weke en die kinders word deur verskeie terapeute en dokters behandel. Die kind word versigtigen met deurlopende mediese evaluasie van hul voedingspype gespeen.” Ongelukkig het hierdieoplossing natuurlik enorme finansiële implikasies. Marquerite vertel dat sy R200 000 nodig hetom Ayden Oostenryk toe te neem, en as ‘n enkelma van ‘n tweeling, is dit ‘n reuse hindernis omte oorkom. Marquerite het ‘n trust gestig om geld in te samel om nie net vir Ayden te help nie,maar ook ander ouers wie se kinders spesiale behoeftes het. “Ek wil graag ander ouers ookbystaan, omdat ek weet hoe moeilik dit is en hoe min hulp en ondersteuning daarbuite is,” sêMarquerite. Indien jy graag ‘n donasie aan die Special Needs Support Trust wil maak, of metMarquerite oor spesiale behoeftes in verbinding tree, skakel haar gerus by 076-331-7383.-----------------------------------------------------------------------------------------------------Ondersteun dié projek - WOMF AdvertensieAS deel van ’n geldinsamelingsprojek sal André the Hillarious Hypnotist van 22 tot 27 Maart om19:00 in die Windmill-casino-en-vermaaklikheidsentrum se konferensiesaal optree.Dié geldinsamelingsprojek is ten bate van Ayden Potgieter.Ayden is een van ’n tweeling wat op 29 weke prematuur, met baie komplikasies, gebore is.Hy het sy eerste nege maande in die intensiewesorgeenheid van ’n hospitaal bestee.Die geldinsamelingsprojek word gehou om vir sy verskeie terapiesessies en andermediese uitgawes te betaal. Kaartjies kos R70 en is reeds by die Windmill-casino-en-vermaaklikheidsentrum te kry. Verversings sal verskaf word.
Kids around the world that has already been successfully tube weaned in Graz Daniel HarrisonFrom: Great BritainTube free since: Summer 2011Email: email@example.comDaniel and his family are from Nottingham, Great Britain. He has an Autistic Spectrumdisorder. During his first month of life he started to drink and eat. However, he vomited a lot andsuffered from a reflux. After he developed a strong oral eating aversion. As a consequence he developedrefused any kind of food and he stopped drinking as well. At the age of 1,5 a nasogastric feedingtube was inserted. Since that time, he never tried to eat orally by himself and as a result ofDaniel´s long-term feeding via a tube, he got tube dependent. After unsuccessful treatment termonsite, his family heard about the Graz feeding tube weaning model and contacted NoTube. Theydecided to participate in the program and at the age of 5, in April 2011 Daniel and his family Danielvisited Graz and started with the tube weaning treatment. After one month he was nearly tubeweaned. Finally, Daniel was successfully tube weaned at home in Summer 2011. Reagan BentzFrom: USATube free since: 16.12.2010Email: firstname.lastname@example.orgReagan and her parents Tracie and Tim from Bartlett in the United States registered in December2010 for NoTube’s Netcoaching program. Reagan has some very severe medical diagnoses, Tube’swhich had made it necessary for a feeding tube to be placed in the first place: Double inlet leftventricle, aortic atresia, Laevo-transposition. One week after birth she already ha her first transposition. hadoperation, followed by another in October 2010.As a negative side effect Regan got NG tube dependent. So their parents contacted the NoTube NG-tubeteam in December 2010 and on December 12th, when Regan was only 5 month old, theNetcoaching program started. NoTube´s medical and psychological professionals coached Reganand her parents through the Netcoaching program and after only 4 days she got her last tube feed.Reagan is tube weaned since one year, which is a blessing for the whole famil family.
Daniel GronowFrom: AustraliaTube free since: 23.04.2011Email: email@example.comDaniel and his parents Amanda and Brendan from New South Wales in Australia registered inMarch 2011 for NoTube’s netCoaching program. Daniel was a monochorionic twin pregnancywith discordant growth, followed by severe intrauterine growth restriction with reverse enddiastolic flow, due to a marginally inserted umbilical cord to the placenta. Amanda got anemergency caesarean at 29 weeks of gestation.So Daniel was premature and small for date, which had made it necessary for a NG NG-tube to beplaced. During feeding Daniel by tube he showed a lot of negative side effects of tube feeding.He vomited, retched and gagged. The NoTube team analysed Daniel´s conditions and found out,that none of his diagnoses in their current state made it necessary for him to be tube fed! WhenDaniel and his family started the NetCoaching program, his tube was already placed for 10month. Just one month later, after starting with the netCoaching program, Daniel was tubeweaned and he has been tube-free ever since. free Lukas TallentFrom: USATube free since: 23.10.2010Email: firstname.lastname@example.orgLukas and his parents Andrei and Aubri from Honolulu in the United States registered inSeptember 2010 for NoTube’s netCoaching program. Lukas has some very severe medicaldiagnoses, which had made it necessary for a feeding tube to be placed: Hypoxic ischemic ,encephalopathy, global diffuse brain damage, seizures, high blood pressure, aspirationpneumonia (once), dysphagia and reflux.
Zoe HeydingFrom: USATube free since: 16.06.2010Email: email@example.comZoe, her mother Maria and her family from the United States registered in May 2010 forNoTube’s netCoaching program. Zoe had some very severe cardiac problems, which had made itnecessary for a feeding tube to be placed.As an unintended negative side effect Zoe developed reflux and as a result of this, she vomited effectand gagged a lot. In June 2010 she got her last tube feed and to the delight of her parents, Zoehas been tube-free ever since.
Awards Press CoverageAwardsIn 2011, NoTube has won the runner up prize at the Startup Weekend Zurich and was awarded runner-upthe Fast Forward Public Forward Award by the Styrian government.Press CoverageEvery year several media reports about the Graz tube weaning method and NoTube arepublished. A recent selection can be found below. Media representatives interested in our workplease contact firstname.lastname@example.org for journalistic inquiries.Online Television coverage of Lucia Belle on ACA – Help Lucia learn to eatLucia Belle´s story is described by a report from 2009 on ACA. One aim is to help her familyfundraise the money for their trip to Austria to wean off their child from its feeding tube. Finally,in June 2009, the little girl participated in the Graz Tube weaning Program and was weaned Tube-weaningsuccessfully.Whitehorse Leader 12. August 2009: Laylas ne hunger for life newThis article is about little Layla from Australia who was born premature (24. Gestation Week)and tube feed for almost 3 years. The mother reports about the successful tube weaning in Graz.
Online Television coverage of the miracle Twins and their journey to Graz,AustriaAt the end of January 2012, an Australian family is interviewed and talks about their experiencesand their journey to Graz, Austria. The report is about their identical twins, Byron and Lincoln. rneyByron was born 3-times bigger than Lincoln. Both had a rough start. Like a miracle, both timessurvived. But because of Lincoln´s severe medical condition he got a feeding tube, from whichhe has been fed since birth. To get rid of his tube, the family went to Graz, Austria, whereLincoln finally was weaned off his feeding tube successfully.Daily Mail 19. October 2010: Bite by bite, girl who never learned to eat enjoysfirst taste of real foodThis article from a British newspaper is about little Tabitha, whose parents care for funds for thejourney to Graz to wean their daughter from her feeding tube.BBC Nottingham 10. November 2010 - Parents seek help for boy who does noteatBBC reports again Daniel´s story. He is an autistic boy from Great Britain and has been tube fed anfor years. The BBC reporter talks about the possibility to participate the tube weaning program inGraz, Austria.
History - How NoTube Grew From Graz To The World:Our History: Embedded in the Medical University Hospital GrazNoTube and its services are based on a long tradition of medical expertise derived from researchand work experience by the interdisciplinary team of the University Children’s Hospital Graz. Atthis clinic, the 3-week intensive tube weaning approach called “The Graz Model” has beendeveloped, presented, published and evaluated. It is also at this Hospital at the psychosomaticdivision, that the In-/Outpatient treatment takes place.The University Hospital GrazThe University Hospital Graz was founded in 1788 and currently provides over 1500 beds. Aclose link between clinical work and the research and teaching conducted at the MedicalUniversity Graz has been implemented from the beginning and is much appreciated by patients.The Medical University Graz is a teaching and research centre of international reputation forthousands of students, research fellows and teachers. 3 Researchers from the Medical Universityhave been awarded the Nobel Prize.The Psychosomatic DivisionOur senior medical experts continue to work at the Psychosomatic Unit of the PediatricDepartment. It was founded in 1981 and specializes on the increasing cases of feeding and eatingbehavior disorders in early childhood and adolescence, for which specific programs have beendeveloped.It is equipped with: 8 beds for adolescents 4 parent-child-units
A team of pediatric specialists of all sub disciplines, radiologists, surgeons, nutritionists, psychologists, psychotherapists, speech therapists, occupational therapists, physiotherapists, teachers, early interventionists, social workers, dedicated medical trainees as well as specifically trained nursing staff.24/7 medical support is available in German or English. Communication is also possible inFrench and Italian and interpreters for any other language can be provided.Medical Experts in tube weaningNoTube offers services to parents and professionals affected by children with earlyeating behavior disorders, particularly feeding tube dependency.NoTube is a spin-off company of the University Hospital of Graz, Austria. NoTube offersservices to parents and professionals affected by children with early eating behavior disorders,particularly tube dependency. This condition leaves a child relying on a temporary feeding tubewithout any medical intention or cause. The effects can be devastating, leaving the family awakeat night and the child developmentally delayed.NoTube’s experts have weaned more than 1’600 children off their feeding tubes over the past 20years. This website represents an effort to help children around the world to overcome the severecondition of tube feeding.