JOLLIE JIK FEES BLOEMFONTEIN 21 Maart 2013 Fees Organiseerder: Jolandi Myburgh Sel 0827739858 e-pos info@jolliejikfees.co.za

1. 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 physical
growth is very impaired. I’m not gaining enough weight because Mom has to feed me through a
tube in my tummy. It’s like being on a non-stop liquid diet. I don’t even like sweeties or juice – I’m
scared swallowing will hurt. I’m struggling to form certain sounds because the muscles in my
mouth is underdeveloped. With eating and drinking to develop these muscles and a bit of speech
therapy afterwards I will hopefully be talking nonstop one of these days. Mommy has been trying
with various therapists to get me to eat for the past five years. But fortunately Mom heard of this
wonderful hospital in Austria, Graz, specialising in eating aversions. They have been dealing with
eating aversions for over 20 years and have helped a lot of kids like me to eat and drink like normal
children.
Our plan is to go there next year in June (2013). But now we need all the help we can get. We need
funds 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 is
registered 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 direct
deposit please put your email address or cellphone number as reference as we would like to send a
thank 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 on
the hospital in Graz if you would like to read through it as well as some documentation of success
cases of kids around the world. Lastly I’ve put some information on the hospital in Graz. They’ve
won 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: snsbfn@iburst.co.za

2. Copied from The hospital’s website to explain Tube dependency:
The “normal” child
Learning to eat is a normal process in a child's development. This process needs common sense
and a basic set of parental skills in sensitivity, cue reading, commitment to want to feed and an
engagement for the child's growing sense of autonomy and self-competence.
The “special” child
However, when a baby is born prematurely or suffers from a physical anomaly needing
immediate surgical intervention or is suffering from any other severe pediatric disorder, then
things are all different. Suddenly the essential developmental step of learning to eat is failing to
develop normally. Thus a feeding tube is often given to the infant or child. Subsequently the child
might 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 child
thrive 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 show
distinct food refusal and avoidance patterns, leaving both child and family with traumatizing
challenges and a significant financial burden.
What exactly is tube dependency?
Tube dependency is a distressing and unintended result of tube feeding in infancy. The condition
of tube dependency can be defined as active refusal to eat and drink, lack of will to learn or the
inability and lack of motivation to show any kind of precursors of eating development and eating
and 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 other
oppositional and aversive behavior. It may influence the quality of life of the affected infants and
their families to such a degree that all other troubles fade into oblivion besides the nightmare of a
child who will not eat or drink and does not thrive even when enterally fed. Nevertheless, tube
dependency is until now not recognized as a problem by many pediatricians. These children are
referred to as children with feeding disorders/children with early eating behavior disorders.

3. ---------- MY LIFE ----------
I was born on 27 April 2007. Mommy struggled for five years to fall pregnant, so we decided that
we’re not going to make her wait for us the whole nine months. So at 29 weeks me and Kyle made
our appearance into her life. I think it was the happiest day in her life, but we decided to be a bit
naughty and played a few tricks on her. Because we were born so small (I weighed 1088g and Kyle
1140 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 help
of all the angels watching over me I survived, but that meant the start of a very long journey for my
whole family.
I needed some more help breathing after that – so I was ventilated for seven months. I stayed in
hospital for 9 whole months and enjoyed all the attention, but I could see mommy got very stressed
and tired of me not being home. Kyle went home after three months, but mommy and Kyle came to
visit me every day in hospital. Because of my damaged lung I had to be on oxygen until my first
birthday.

4. Sick after an operation
While in hospital I underwent operations on my heart, my bowel, my tummy and they took my
tonsils out. I also suffered from reflux, but after a Nissens operation I felt much better and could
keep my food in.
Although the ventilator kept me alive it hurt me very much, so I decided that I won’t swallow
anything anymore. The doctor decided to give me a Mic-Key. It is feeding tube directly into my
tummy delivering all my nourishment and liquids. Mommy makes special foods and they feed me
five times a day.
My Mic-Key

5. Currently I’m in a special needs school in Bloemfontein were they teach me a lot of new things. We
sing, paint and I play with my friends. They also help me with my sensory integration problems
there. Here is a photo of when we celebrated my fifth birthday at school. Because I’m not eating, I’m
not growing as fast as other kids – I’m a bit small and emotionally I’m like a 2 year old. I also
struggling forming certain words because my muscles are underdeveloped. They need some
practice – all with eating and drinking.
Celebrating my fifth birthday at school

6. Mommy has been taking me to therapists to try and help me realize that eating or drinking doesn’t
hurt, 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 eating
aversion. There is a special kids hospital in Austria specializing in tube weaning babies and children
with feeding disorders. (http://www.notube.at). There’s about fifteen South African parents that
already 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 .

7. Me playing Peek-a-Boo
Me and Mommy

8. Me, Mommy and Kyle

9. Courant Artikel
‘n Lewe sonder kos
Wednesday, 25 July 2012 11:27 Marinè Jacobs
Mariné Jacobs
Ayden Potgieter se verhaal is een wat selde gehoor word. Hy is ‘n gelukkige, blondekop
vyfjarige van Bloemfontein, maar hy het nog nooit geëet het nie. Ayden ly aan ‘n seldsame eet-
eet
aversie, wat beteken dat hy ‘n onoorkombare vrees het om te eet of te drink. Ayden en sy
tweelingboetie Kyle, is op 27 April 2007 gebore, ‘n volle 11 weke te vroeg, vertel ma
Marquerite. 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 klein
was. Kyle het vinnig vordering getoon
en 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,” sê
Marquerite. 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
breinskade
is. Hoewel die ventilator Ayden se lewe gered het, het dit hom geleer om nie te sluk nie. Hy
moes ‘n “mic-key” ontvang - ‘n pypie wat direk in sy maag ingaan, waardeur Marquerite hom
kan voed. “Hy moet vyf keer ‘n dag gevoed word en ek volg streng hoeveelhede wat deur ‘n
f
dieetkundige 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 te
eet. Ayden is besonder klein vir sy ouderdom en sy ontwikkeling is ver agter. As vyfjarige kan
hy steeds slegs ‘n paar woordjies sê, glad nie met speelgoed vir sy ouderdom speel nie en loop
ouderdom
hy nou eers ‘n jaar. Hy is tans in die Moné skool in Universitas, Bloemfontein, ‘n skool vir
Moné-skool
kinders met spesiale behoeftes. Daar is egter hoop. “In Oostenryk is ‘n mediese sentrum wat
kinders met ‘n eet-aversie weer leer om normaal te eet,” vertel Marquerite. “Dit neem vier tot vyf
aversie normaal

10. weke en die kinders word deur verskeie terapeute en dokters behandel. Die kind word versigtig
en met deurlopende mediese evaluasie van hul voedingspype gespeen.” Ongelukkig het hierdie
oplossing natuurlik enorme finansiële implikasies. Marquerite vertel dat sy R200 000 nodig het
om Ayden Oostenryk toe te neem, en as ‘n enkelma van ‘n tweeling, is dit ‘n reuse hindernis om
te 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 ook
bystaan, omdat ek weet hoe moeilik dit is en hoe min hulp en ondersteuning daarbuite is,” sê
Marquerite. Indien jy graag ‘n donasie aan die Special Needs Support Trust wil maak, of met
Marquerite oor spesiale behoeftes in verbinding tree, skakel haar gerus by 076-331-7383.
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Ondersteun dié projek - WOMF Advertensie
AS deel van ’n geldinsamelingsprojek sal André the Hillarious Hypnotist van 22 tot 27 Maart om
19:00 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 ander
mediese uitgawes te betaal. Kaartjies kos R70 en is reeds by die Windmill-casino-en-
vermaaklikheidsentrum te kry. Verversings sal verskaf word.

11. Kids around the world that has already been successfully tube
weaned in Graz
Daniel Harrison
From: Great Britain
Tube free since: Summer 2011
Email: kevin.harrison@me.com
Daniel and his family are from Nottingham, Great Britain. He has an Autistic Spectrum
disorder. During his first month of life he started to drink and eat. However, he vomited a lot and
suffered from a reflux. After he developed a strong oral eating aversion. As a consequence he
developed
refused any kind of food and he stopped drinking as well. At the age of 1,5 a nasogastric feeding
tube was inserted. Since that time, he never tried to eat orally by himself and as a result of
Daniel´s long-term feeding via a tube, he got tube dependent. After unsuccessful treatment
term
onsite, his family heard about the Graz feeding tube weaning model and contacted NoTube. They
decided to participate in the program and at the age of 5, in April 2011 Daniel and his family
Daniel
visited Graz and started with the tube weaning treatment. After one month he was nearly tube
weaned. Finally, Daniel was successfully tube weaned at home in Summer 2011.
Reagan Bentz
From: USA
Tube free since: 16.12.2010
Email: traciemarcus@yahoo.com
Reagan and her parents Tracie and Tim from Bartlett in the United States registered in December
2010 for NoTube’s Netcoaching program. Reagan has some very severe medical diagnoses,
Tube’s
which had made it necessary for a feeding tube to be placed in the first place: Double inlet left
ventricle, aortic atresia, Laevo-transposition. One week after birth she already ha her first
transposition. had
operation, followed by another in October 2010.
As a negative side effect Regan got NG tube dependent. So their parents contacted the NoTube
NG-tube
team in December 2010 and on December 12th, when Regan was only 5 month old, the
Netcoaching program started. NoTube´s medical and psychological professionals coached Regan
and 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.

12. Daniel Gronow
From: Australia
Tube free since: 23.04.2011
Email: mandyxp@hotmail.com
Daniel and his parents Amanda and Brendan from New South Wales in Australia registered in
March 2011 for NoTube’s netCoaching program. Daniel was a monochorionic twin pregnancy
with discordant growth, followed by severe intrauterine growth restriction with reverse end
diastolic flow, due to a marginally inserted umbilical cord to the placenta. Amanda got an
emergency 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 be
placed. 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! When
Daniel and his family started the NetCoaching program, his tube was already placed for 10
month. Just one month later, after starting with the netCoaching program, Daniel was tube
weaned and he has been tube-free ever since.
free
Lukas Tallent
From: USA
Tube free since: 23.10.2010
Email: aubri.tallent@gmail.com
Lukas and his parents Andrei and Aubri from Honolulu in the United States registered in
September 2010 for NoTube’s netCoaching program. Lukas has some very severe medical
diagnoses, which had made it necessary for a feeding tube to be placed: Hypoxic ischemic
,
encephalopathy, global diffuse brain damage, seizures, high blood pressure, aspiration
pneumonia (once), dysphagia and reflux.

13. Zoe Heyding
From: USA
Tube free since: 16.06.2010
Email: maria.pereda@gmail.com
Zoe, her mother Maria and her family from the United States registered in May 2010 for
NoTube’s netCoaching program. Zoe had some very severe cardiac problems, which had made it
necessary for a feeding tube to be placed.
As an unintended negative side effect Zoe developed reflux and as a result of this, she vomited
effect
and gagged a lot. In June 2010 she got her last tube feed and to the delight of her parents, Zoe
has been tube-free ever since.

14. Awards Press Coverage
Awards
In 2011, NoTube has won the runner up prize at the Startup Weekend Zurich and was awarded
runner-up
the Fast Forward Public Forward Award by the Styrian government.
Press Coverage
Every year several media reports about the Graz tube weaning method and NoTube are
published. A recent selection can be found below. Media representatives interested in our work
please contact press@notube.com for journalistic inquiries.
Online Television coverage of Lucia Belle on ACA – Help Lucia learn to eat
Lucia Belle´s story is described by a report from 2009 on ACA. One aim is to help her family
fundraise 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-weaning
successfully.
Whitehorse Leader 12. August 2009: Layla's ne hunger for life
new
This 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.

15. Online Television coverage of the miracle Twins and their journey to Graz,
Austria
At the end of January 2012, an Australian family is interviewed and talks about their experiences
and their journey to Graz, Austria. The report is about their identical twins, Byron and Lincoln.
rney
Byron was born 3-times bigger than Lincoln. Both had a rough start. Like a miracle, both
times
survived. But because of Lincoln´s severe medical condition he got a feeding tube, from which
he has been fed since birth. To get rid of his tube, the family went to Graz, Austria, where
Lincoln finally was weaned off his feeding tube successfully.
Daily Mail 19. October 2010: Bite by bite, girl who never learned to eat enjoys
first taste of real food
This article from a British newspaper is about little Tabitha, whose parents care for funds for the
journey to Graz to wean their daughter from her feeding tube.
BBC Nottingham 10. November 2010 - Parents seek help for boy who does not
eat
BBC reports again Daniel´s story. He is an autistic boy from Great Britain and has been tube fed
an
for years. The BBC reporter talks about the possibility to participate the tube weaning program in
Graz, Austria.

16. History - How NoTube Grew From Graz To The World:
Our History: Embedded in the Medical University Hospital Graz
NoTube and its services are based on a long tradition of medical expertise derived from research
and work experience by the interdisciplinary team of the University Children’s Hospital Graz. At
this clinic, the 3-week intensive tube weaning approach called “The Graz Model” has been
developed, presented, published and evaluated. It is also at this Hospital at the psychosomatic
division, that the In-/Outpatient treatment takes place.
The University Hospital Graz
The University Hospital Graz was founded in 1788 and currently provides over 1500 beds. A
close link between clinical work and the research and teaching conducted at the Medical
University 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 for
thousands of students, research fellows and teachers. 3 Researchers from the Medical University
have been awarded the Nobel Prize.
The Psychosomatic Division
Our senior medical experts continue to work at the Psychosomatic Unit of the Pediatric
Department. It was founded in 1981 and specializes on the increasing cases of feeding and eating
behavior disorders in early childhood and adolescence, for which specific programs have been
developed.
It is equipped with:
 8 beds for adolescents
 4 parent-child-units

17.  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 in
French and Italian and interpreters for any other language can be provided.
Medical Experts in tube weaning
NoTube offers services to parents and professionals affected by children with early
eating behavior disorders, particularly feeding tube dependency.
NoTube is a spin-off company of the University Hospital of Graz, Austria. NoTube offers
services 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 tube
without any medical intention or cause. The effects can be devastating, leaving the family awake
at night and the child developmentally delayed.
NoTube’s experts have weaned more than 1’600 children off their feeding tubes over the past 20
years. This website represents an effort to help children around the world to overcome the severe
condition of tube feeding.