About The Bowel Group for Kids

The BGK was formed in 1996 by a group of parents and professionals who saw the need for a support group for children and families affected by Hirschsprung’s Disease (HSCR) and Ano-Rectal Malformations (ARM). But how did we actually come about?

Prior to the BGK forming, a small support group for HSCR was already running at the Children’s Hospital Westmead (CHW) in Sydney by Eunice Gribbin and Geoff Follett. Around the same time that Eunice was trying to expand this group, Vicki and Paul Ratcliff and Dr. E. Shi at Sydney Children’s Hospital (SCH) were talking about starting a group for ARM. I was working at SCH at the time as an RN and along with Doreen Gribbin (mother and nurse), we all began discussions on how to bring the 2 together. It was quickly decided that we could form a support group that encompassed both HSCR and ARM and other bowel conditions together. Even though these conditions are very different in origin and presentation, they are congenital, rare and result in very similar long term complications and problems. We initially formed under the banner name of A.P.S.A. but later changed our name to Bowel Group for Kids (BGK) to be more user friendly!

So myself, Doreen, Eunice, Geoff and Dr. David Croaker met on a regular basis to ‘form’ the support group along with many people behind the scenes. We started off with a very old computer and just a few dollars that each of us put toward expenses. We started the fundraising effort immediately! We had and continue to have the backing of both Children’s Hospitals in Sydney. A lot of the legal leg work was done by Doreen in the early days to set us up as a charity. We spent considerable time meeting to construct our constitution and meet the guidelines set down by the various governing bodies. The duties and responsibilities of the management of charities are wide ranging and have to be taken seriously. Being an incorporated registered charity come with certain responsibilities and adherence to protocols from Government such as:

The NSW Office of Liquor, Gaming and Racing authorizes the BGK to fundraise under their Office Of Charities department. To qualify for this we must submit audited reports to them for verification and abide by the laws set down. Our charity registration number is: CFN 12693 The BGK is incorporated under the laws set down by the Department of Fair Trading. Incorporation benefits an association and its members, however it also brings a number of statutory obligations. The Associations Incorporations Act 1984 provides community groups with a simple and inexpensive means of becoming a legal entity.

Each year we must send off an audited financial report to these Government authorities and inevitably then spend the next few months responding to the never ending requests for further information or adherence to changes to the way the forms are filled out from year to year! Our financial reports are maintained on the MYOB system which has streamlined things considerably over the years. We have come along way from our beginnings of keeping a paper trail of expenses etc. Eunice has very vivid memories of typing our very first conference notice on a portable typewriter!

No-one on the committee is in a paid position; we are all in voluntary positions. We receive absolutely NO money from Government so we rely wholly on monies that we receive through donations, fundraising and member fees. This money is put towards the ongoing costs of maintaining the group. We try to keep our membership fee low and we haven’t increased it for many years. Fundraising for bowel disorders is never easy though so we are very thankful for any donation we receive. The BGK membership includes families from all states and territories in Australia and members in New Zealand. Our membership continues to grow but it has been a hard road to this point to get ourselves ‘out there’. We often get asked why we don’t ‘advertise’ ourselves to Doctors, other medical professionals and hospitals, the answer is WE DO !! A lot of the time what happens is we have a contact within a hospital but then that person moves on to another job or area etc. and we have to start all over again. The best advertising we can have is word of mouth by you, our existing members. Please tell your surgeons, paediatricians, gastroenterologists, Stomal therapists, dieticians and anyone else you can think of about us. Now with the internet and our web page, finding us is becoming a little easier. Our committee has seen many changes over the years and we thank all those people who have been along with us at one time or another. Initially our committee was situated in Sydney and we were able to hold meetings regularly. We are now spread out across the globe. We utilise the internet greatly and also have ‘conference calls’. We also hold our AGM at our yearly conferences where most committee members are present. Which brings me to our present committee. We are comprised of parents and professionals from many walks of life dedicated to helping families affected by HSCR or ARM.

PATRON - Duncan Armstrong

Olympian, sports presenter, public speaker - Duncan is all these things and more. Duncan approaches everything with the same zestful attitude - the very one that helped him win gold at the Seoul Olympics... and recently inspired parents and their children to achieve their highest personal and health goals at our last conference in 2007. Duncan is highly qualified to advocate for us, he too was born with Hirschsprung’s disease. He is the proud father of 3, soon to be 4 beautiful children.

President - Jenny Kreuzinger

I was a paediatric registered nurse at Sydney Children’s Hospital for over 10 years. During that time I cared for many children with HSCR and ARM and found I had a keen interest in these conditions. In 1996 I attended a Bowel Disorders Conference in the USA and this truly sparked my desire to do more, thus my involvement with the BGK - I am a founding member. I am currently the president and also the ‘SEGMENTS’ editor. I also maintain the database. With the marvels of modern technology I am able to put the newsletter together and then e-mail it off to our printer in Sydney. I currently live in Canada with my Canadian husband and our son, Hayden.

Secretary - Eunice Gribbin

My interest in the association began many years ago due to a lack of information and support offered to families who had a child born with a severe bowel condition, such as Hirschsprung’s disease or Imperforate anus. Our son Adam was born with Down syndrome and Hirschsprung’s disease in 1989 so is now aged 19 years. I am a registered nurse, specialised in operating theatre nursing since 1979. I have worked in many of the hospitals in Sydney including The Children’s Hospital at Westmead, St Vincent’s at Darlinghurst, Royal Prince Alfred at Camperdown and the Royal Women’s at Randwick, as well as peripheral teaching hospitals such as Nepean and Liverpool. Currently I work in nurse education for the University of Technology in Sydney facilitating 3rd year undergraduate Bachelor of Nursing students for their elective clinical placements. My role is varied as I look after approximately 25 students placed in several hospitals and travel between Camden, Liverpool, Sutherland, St George and Prince of Wales. I also tutor medical students in the new School of Medicine at the University of Western Sydney. I am currently studying at the University of Sydney in a Master of Health law which is proving very interesting, the students come from a mix of backgrounds in law and medicine/nursing so the debates are interesting to say the least!

Our 3 daughters are now living independently, our 26 year old is living in London, the other 2 are 23 and 21.We have lived at Oakdale on our 31 acre property since 1980, the lifestyle is great, plenty of space and a peaceful existence. The long distances we drive are worth it to come home to the sanctuary living on property allows you. I enjoy the opportunity to learn and being part of the association has allowed me to expand my knowledge in this area. I also treasure the many friends we have made since the association began.

Membership Secretary - Sue Blackall

I have been involved with BGK since 1998 and I am the South Australian contact and Membership Secretary. I have two children, Alex aged 17 and Jennifer aged 12 (who was born with cloaca and neurogenic bladder). When my last profile was in the BGK newsletter I was working as a secretary, but Jennifer’s medical problems saw me going to TAFE to study Disability and then Family Support. I still do some work in the disability sector, but my main job is as Shift Supervisor with the Children’s Contact Service, where I facilitate supervised contact and change over contact visits between children and their parents. It has been wonderful to be involved with the support group for the last 10 years.

Ano-Rectal Malformations Contact - Vicki Ratcliff

I’ve been part of this valuable support group since it’s beginnings. Belonging to this group has been enormously beneficial to our family as there’s so much comfort in knowing that we’re not alone. I am the mother of two wonderful children William and Bonnie. William, my first child, was born with an imperforate anus. That was twenty years ago and he is now a university student living on campus in Wagga Wagga. Where did that time go!

William still faces many ongoing challenges managing his bowel. Being an adult now and living independently from the family has meant that he faces them alone. This has probably caused me more anxiety than William as there are new boundaries in place and limits to which he will allow myself and my husband Paul to interfere.

Our family has recently moved to Sydney's northern beaches and love the new lifestyle here. I am continuing to follow my passion of painting in water colour and oils. I have started teaching water colour classes locally which is a lot of fun. Bonnie and Paul relocated with great ease and William- well he has spent more time as a country boy in Wagga Wagga than he has in our new home. We love to have him back here in his holiday breaks but have to work hard to remember that he is an independent adult when he is here. I am responsible for mailing of the SEGMENTS newsletter and I have also spoken at many of our conferences.

Wound Care Specialist & Victorian Contact - Elizabeth Dyson

My daughter Jessica was born with Hirschsprung’s disease (long segment) on 13/9/99. After searching for support, I finally came across BGK (formerly A.P.S.A.) by reading an article in the Ostomy Australia magazine. I contacted Eunice and shared my story. Since 2000, I have been a Committee member for BGK, acting as the Victorian contact for parents. I have also contributed to the last two BGK Conferences held in Sydney.

I am a Registered Nurse with extensive experience within the community setting and more recently worked as a Clinical Nurse Consultant, specialising in Wound Care. I am also an Assistant Lecturer for Monash University, teaching & supporting doctors, nurses, podiatrists & pharmacists in Post Graduate Studies in Wound care. I hold a B. Nurs., Post Grad Cert. in Wound Care I have found my skills to be invaluable in the care of Jessica but also the knowledge I have gained has helped to provide support to other parents in a similar situation.

Stomal Therapy Nurse - Tracey Newcombe

I am a Stomal therapy nurse, continence consultant and wound care consultant working in Nowra, NSW. I have been a registered nurse for more than twenty five years, and in that time have worked in a variety of specialty areas, but my interest in Stomal therapy began when my daughter, Hannah, was born in 1996. Hannah has Hirschsprung's disease and neuronal intestinal dysplasia, and continuing problems have meant that she has had stomas of different sorts since she was a baby.

My husband, Tony, and I live on a small acreage in Tomerong, a nice quiet place, with room to move for our family and our three dogs.

I first joined BGK in 1997, after I met Eunice during one of Hannah's hospital visits. I have found the support invaluable, as I think we can all feel terribly alone when dealing with a sick child, especially one with a "rare" problem.

I hope to be able to help our members with practical advice on Stomal therapy issues, and the day to day problems we all experience. I have had the opportunity to speak at previous BGK conferences for parents and educators, and I am committed to public education about bowel disorders. Our new website opens another opportunity for parents and carers to share information and exchange tips and support. My hope is that, by better understanding, our children' roads will be easier. I look forward to hearing from group members on the forum. I will be moderating the forum so if you have any questions please don’t hesitate to ask.

Conference Co-ordinator - Julie Cowdery B.Ed.

I have the very rewarding task of being the conference organiser for the organization. I have been an active member for over 5 years. Stephen and I have a daughter Jacqueline who is almost six (as she keeps reminding us.) Jacqueline was born with Hirschsprung’s disease. My background has always been in Education and I have been working in the corporate sector as a Learning and Development manager for many years with responsibilities at an International and National level. It has been a wonderful experience being involved actively with the Bowel Group for Kids as I am constantly learning and gaining so much from the experience.

Clinical Nutritionist - Vicki Witt

I am a Clinical Nutritionist. My qualifications include a Bachelor of Science (Nutrition & Food Science), and a Post Graduate Diploma in Clinical Nutrition. I have an interest in, and have completed a Post Graduate Diploma in Herbal Medicine. I primarily uses diet in prescribing and, if need be, introduce nutritional and herbal supplements to compliment.

I established my private practice in 1998 after having spent time in the USA researching and compiling the best of clinical nutrition to form a diet program that can be modified to suit different body types, biochemistry’s and individual lifestyles. As part of the healthy eating design, I tailor a specific program for each patient. I specialise in Weight loss and Wellness, but have extensive experience working with allergies and restrictive diets. Previous to opening my own practice, I worked in an allergy clinic treating a variety of allergies, intolerances and sensitivities.

Over the years, I have become particularly clever at eliminating constipation in adults and children alike and have gained a name for myself in this field. I have two gorgeous children. Alyssa, 4 years old and Cooper, 2 1/2 years old. Cooper is gluten intolerant and so needs a diet omitting all gluten containing grains. This of course has been no problem for me given my background. Cooper leads a normal fun life as a 2 1/2 year old.

We are always just a phone call or e-mail away if you require help and support. We are also able to put you in contact with other families in your area if you wish that are going through similar issues. A lot of our time is spent sourcing appropriate information to go into the newsletter, we have always prided ourselves on not just replicating medical journal articles which are not always relevant to our families here in Australia. But we do have reciprocal rights with other support groups throughout the world so we are always looking for information that may be of assistance to our members. Of course we have found that the most valuable stories are those contributed by our own members, we continually receive positive feedback from people saying it helped them to realise they were not alone and that others have gone through the same thing. So please when you have time take a moment to sit down and write your child’s story and share it with the BGK community.