Why are some children born with a hand/arm difference?
For years, little information was collected about hand/arm differences which left parents in Australia with many unanswered questions and mixed emotions.
President of Aussie Hands, Brooke Young said: ‘Parents struggle with guilt, wondering if the condition was caused by genetics or something that happened during pregnancy. They want to get answers and know that they are making the best decisions about treatment.’
‘We all want our children to live life to the fullest. For these reasons we were delighted to partner with doctors at the Royal Children’s Hospital and the Murdoch Children’s Research Institute in Melbourne to help establish the Australian Hand Difference Register (AHDR).’
Since commencing in mid-2017, the AHDR now has over 600 children who were born with a hand/arm difference participating. The Register aims to:
• Find out how many children are born with a hand/arm difference in Australia
• Learn more about possible causes and risk factors
• Gain information to help plan services
• Identify possible participants for future research
A congenital upper limb difference is a hand or arm difference that is present at birth. An upper limb difference is present in approximately 0.2% or 1 in 600 of babies born. Sometimes it is detected by ultrasound before birth, but more often it is not found until the birth of the baby.
Head of Hand and Microvascular surgery at Royal Children’s Hospital, Associate Professor David McCombe said: ‘In most cases, the cause is not known but with ongoing research we are learning more about the development of the limbs and what happens in congenital differences.’
Some of the more common differences and diagnoses include (refer to graph below):
• having more or fewer than five fingers (includes radial polydactyly, symbrachydactyly)
• fingers that will not bend or will not straighten (includes trigger digits)
• fingers that are joined together (includes syndactyly)
• bones in the hand or arm that are too short or missing (radial deficiency)
Data from the AHDR 2019 Annual Report show the average age of participants is 5.3 years and the 5 most common diagnoses are shown below:
‘The AHDR is a vital tool that will help us better inform children with a congenital difference and their families. Through the AHDR we are developing a national collaborative research network that we are confident will give us answers to questions about causes and outcomes. As clinicians we would encourage as many families to participate and support the AHDR as much as possible,’ added Associate Professor McCombe.
The Register is managed by researchers at the Murdoch Children’s Research Institute, located at the Royal Children’s Hospital in Melbourne, and includes children from NSW, QLD, SA & WA – with more recruitment sites planned in 2020. The Register has been funded to date by support from the Aussie Hands Foundation Inc. , the Australasian Foundation for Plastic Surgery, and the McNally Foundation.
Using the AHDR to recruit participants has allowed researchers from Melbourne University to explore the concerns, lifestyle impact and positive aspects of having a hand/arm difference. How these children cope with their hand difference is as variable as the differences they each have. Some want to change their hand appearance, others accept it, like it or are proud of their scars. Further research looking into the experience of families with children with congenital hand differences is in development, (see details in the AHDR 2019 Annual Report)
Aussie Hands provides a range of services to support people with hand differences and their families. You can help by donating to Aussie Hands so that work in support, networking and research can continue.
Aussie Hands inspiring story of the month
– Finding joy together as a family during COVID-19
Toni and Hedge have two beautiful daughters, Rebecca and Jessica. During April and May they spent two months in isolation in Melbourne and have experienced both challenges and joy in spending so much time at home together.
The family joined Aussie Hands almost 10 years ago, just after daughter Jessica, was born with a hand difference. After being advised of the option of amniocentesis – testing for genetic or chromosomal abnormalities – or a termination at 20 weeks and deciding on neither, Jessica was born.
Absolutely amazing and rewarding
‘Absolutely amazing and rewarding!’ That is how Aussie Hands Treasurer, Areeb Ovais, summed up his last two years of engagement with Aussie Hands.
Areeb first heard about Aussie Hands in 2018, while searching for an organisation that brought together people with upper limb differences. ‘I was fortunate enough to connect with Elizabeth Serpell through the Aussie Hands Facebook group,’ said Areeb.
He was quite proud of becoming a member of such an established organisation in Australia and said: ‘Meeting Elizabeth, the founder of Aussie Hands, then hearing her story behind the organisation and her son Dave made it quite special and personal for me.’
Aussie Hands inspiring Person of the Month – Callie cuts through the anxiety of starting kindergarten
As parents we navigate our way through life, taking small and often large, steps as each new challenge arises for our children and ourselves.
When one of our children has a hand or limb difference the challenges can seem more intense and confronting as we try and guide them unscathed through life and develop a sense of belonging in society. Sometimes we need to be brave enough to just be there for them when they need us and at other times stand back and watch them blossom. School is one of these steps.
Aussie Hands twins, Callie and Phoebe, started kindergarten this year. School is already daunting for a five-year-old without the extra attention that a hand difference may bring. Callie has a hand difference and is showing mum and dad, Mandy and Phil, how she can shine at school.
Callie and Phoebe were in the same class in preschool but are in separate classes at kindergarten. Their mother and New South Wales Aussie Hands State Coordinator, Mandy said: “The girls are in different classes to enable each of them to shine bright and to grow in independence and confidence. It has worked really well so far, they have grown closer together at home, but it has also allowed them to create independent friendships at school.”
“Callie struggled in the first couple of weeks to make friends independently, but now she has found her voice,” added Mandy.
When asked what school meant to her, Callie replied: “To learn, to read, to write, to spell,” and about her favourite part of class she said: “To write, spell words and help my friends to cut and glue their work.”
It seems the first couple of weeks are well behind Callie as she explained who her many friends are and what she likes doing at lunch and recess: “My friends are Joy, Anya, Tomiwa, Harmony, Diva, Esther, Kalani, Lily, Gnit, Nitnit and I love to play tag and ibble obble black bubble.”
Starting children with hand and limb differences at school can be worrying for parents when they know that they are not going to be there for the questions and the stares that may occur. On asking Mandy how they helped Callie’s move to school, she said: “We tackled this up front. I sent in stories and resources as well as her Doll Like Me for Callie and her teachers to share with her grade in the first week.
“She is known and loved by many in the playground, although I have witnessed a few stares and comments. I am in the middle of addressing this with the school as I noticed that Callie regressed and was sad when this happened.”
“At the time I stepped in and used Nemo (from the Disney film Finding Nemo) as an explanation which was a happy common ground for the kids. The school has been very supportive and mainly assist her in growing in confidence. They will be addressing the other grades shortly to avoid more stares and comments,” added Mandy.
Parents who have kindergarten before them may be anxious, but they should know there is a lot more support for their children now. Mandy advised: “Take time to tour the school, set up meetings to discuss your child’s needs and become part of the school community. It is really important to have confidence in the school that will assist you in moulding your child into the person they become.
“Utilise the Aussie Hands pamphlet for teachers and ensure the school is confident in limb difference language and any individual support your child may need including making sure they are confident in helping assist with any prosthetics or aids your child may use. If they are not confident your child will sense it.”
Mandy and Phil expect both girls to reach for the stars. Callie may need a little more time occasionally, but there is nothing that she is not expected to try, just like the rest of the class.
“In fact, Callie is assisting other children with their cutting as apparently, she is a more skilled cutter than some of her classmates,” said Mandy. Callie has recently won her first award for being an independent worker and striving to always do her best. Any parent would be proud of these successes.
As both Callie and Phoebe blossom in their own unique ways, it is reassuring to know that school can be less confronting than expected. Support, awareness and understanding of hand and limb differences is more widely embraced as our children start to take these brave steps through life.
Thanks to Callie, Phoebe, Mandy and Phil for sharing their inspiring Aussie Hands story.
Cancelled: Aussie Hands March and April Events
The Board has decided that the events organised by Aussie Hands in March and April 2020 will not go ahead.
While it is disappointing for members and volunteers, this seems a prudent course given the current health warnings and advice from the Chief Medical Officer that people try and avoid non-essential gatherings.
We appreciate that organisers have put time and effort into arranging these get togethers and that one of Aussie Hands strengths is its social networks. We are sorry for any disappointment and if you wish to discuss this please send an email to firstname.lastname@example.org and a board member will contact you. We are monitoring the situation as it develops but at this stage, we do not anticipate any change to our planned events later in the year. The impact of Covid-19 is a trying time for all of us and our families and our thoughts are with you all.
Aussie Hands Appoints new Patron, Jessica Smith, OAM
Aussie Hands is pleased to announce that Jessica Smith has been appointed as Patron, effective from February 2020. Jessica succeeds Kate Doughty, who has served as Patron for the past 12 years.
Speaking on behalf of the Board, Chairperson Brooke Young says: ‘Jessica is the ideal person to step into the role of Patron. She is one of Aussie Hands most loved members and an inspiration to people of all ages. Her writing and speaking about positive body image, setting goals and celebrating difference is powerful and uplifting. We are certain that Aussie Hands will benefit greatly from having someone of Jessica’s profile and energy as Patron.’
Jessica brings a rich and varied background to the position. She was awarded the Medal of the Order of Australia (OAM) in last year’s Queen’s Birthday 2019 Honours List. Jessica is well known to members of Aussie Hands because of her book Little Miss Jessica Goes to School. What you might not know is that Jessica represented Australia in swimming, from the age of 13 to 20, travelling overseas every year that culminated in her participation in the Paralympic Games in 2004. Jessica retired from swimming when she was 21 and went on to study a Bachelor of Science in Public Health. From her own personal challenges with health and body image she has become a passionate advocate and activist for positive body image and diversity.
Taking on the role of Patron, Jessica reflected: ‘For the past few years I have watched in awe as my predecessor, Kate Doughty contributed to the growth and expansion of Aussie Hands. Kate will be sorely missed as Patron, but I’m sure I speak on behalf of all members in wishing Kate every success in her future personal and professional endeavours, and of course, I will be joining members as we cheer loudly while she commits herself to making the Australian Paralympic Team to compete in Tokyo later this year.
I am delighted to join an organisation that continually strives to enrich the lives of people living with a hand difference and their families. I hope that I can help members by sharing my personal journey and highlighting the wonderful opportunities and success I’ve had thanks to my hand difference. Bringing more awareness to the organisation will be one of my immediate goals, and I hope to use media and social media platforms to do this. Building social awareness is crucial to the longevity of Aussie Hands, as it will enable more members of the wider community to understand and appreciate the importance of our work.’
Jessica says that she aims to expand the organisation’s membership, volunteer and donor base and support the wonderful work being done around Australia through an active social media campaign.
She is experienced with the power of social media. Jessica began the ‘Join the Revolution’ campaign to help inspire people to accept themselves as they are and to support and unite people from all around the world. The success of the campaign has led her to become a motivational speaker and she now educates others about positive body image, diversity and mental health. She has stood on many stages including: UN events, schools, universities, businesses and communities sharing her story and in-depth analysis of these issues. Her dedication has included working with not for profit organisations and as an Ambassador for various foundations in Australia. Jessica has received many awards for her work as an advocate in the community and recently achieved one of the highest recognitions as an Australian.
On 24 October 2019, Jessica received an OAM for service to the community through a range of roles. The OAM was presented to her at the Australian Ambassador’s residence in the United Arab Emirates (UAE), conducted by His Excellency Mr Arthur Spyrou, where Jessica is currently living with her husband and three children. An OAM is presented to Australian citizens in recognition of outstanding achievement or meritorious service that she has reached on both levels.
Jessica will travel back to Australia regularly and thanks to the wonders of social media will be able to keep up to date with Aussie Hands members and activities. She has invited members to follow her on Instagram @jessicasmith27.
Aussie Hands inspiring person of the month – Bonnie Gillespie, a fighter and lover of life
Fiery red hair, muscles upon muscles, charming Kiwi accent, loud laughs, big smiles and jumping around like a fire cracker – this is Bonnie Gillespie.
This is Bonnie Gillespie. A fighter and a lover of life. Bonnie has just won her second Mixed Martial Arts (MMA) cage fight and is looking upwards, her trajectory is to reach the Ultimate Fighting Championship (UFC) – Ronda Rousey territory for the uninitiated. Oh, and Bonnie has a hand difference that has been part of her journey, her strength and determination.
Bonnie grew up in Levin on the north island in New Zealand. She said, “I respected my elders and teachers but then the bullying started in primary school, when I was around ten.” People had always noticed her hand difference but then it became bullying. She asked her parents and brothers what she should do, what she should say, and received conflicting messages. Her dad said ‘knock ‘em down’, her brothers said ‘harden up or drop them’ and her Mum said ‘you can’t retaliate because you will get in trouble’. But she did retaliate as her first instinct was to follow in her brothers’ and father’s footsteps with so many males in the house. Bonnie said, “I was copping it every day and started fighting, getting sent to the Principal’s office, moved to other classes as I was distracted by the bullying in the classroom.”
There wasn’t any support groups like Aussie Hands or Limbs for Kids in her home town. Her mum took her to the local Kimberley Centre in Levin that was once the largest centre for the intellectually disabled in the Southern hemisphere. They made her a strap to put a knife and fork in, but it didn’t work for her, so she just adapted and used her hand as a scooper for peas and such. She said that back then there was around 10,000 people in Levin and they were all big families. Everyone knew everyone – there were only a few kids around with limb differences that she knew of. She became mates with Brent Tucker, also from Levin, who is a rep rugby player and rep cricket player. And it hasn’t stopped Bonnie doing anything as well. Bonnie was a track cyclist and swimmer in New Zealand and has participated in rugby, gymnastics, Judo dancing, Brazilian jujitsu, Zen Do Kai karate and Muay Thai boxing. Bonnie said, “My brother was Sportsman of the Year at college and I was sitting back in the audience thinking, I am going to be there next year. And I made it happen. You had to do 12 to 15 sports to be up on that stage.”
Bonnie has also achieved success in the Legends Football League (LFL) in 2013-2014. The male voice over on Bonnie’s LFL story says, ‘One who engages battle courageously, a warrior’ and ‘fireball of intensity, passion and heart.’ Monique Gaxiola, another former player with the LFL said, ‘She is a different breed and not from this planet! She’s a beast on the field and a little ball of muscle.’ Bonnie only wore one glove in the game and said, “I had extra training for catching. People were wondering why I only had the one glove and wanted to know about my hand, but I just focussed on catching with one hand and closing the gap with practice after practice after practice.” Her inspiration and motivation have been her brothers, “I’ve always been competing with my brothers to be at their standard. I decided I was going to fight life because this hand is nothing compared to what is out there.” People like pro skateboarder, Felipe Nunes, who lost both his legs when he was six and our own Nicholas Vujicic from Melbourne who was born with no legs or arms, tried everything possible, and is now a motivational speaker that travels the world.
I asked Bonnie if she was a warrior off the field as well and if this had anything to do with her hand – was it part of her persona to combat the questions, the scrutiny? She said, “Yeah, I think so, from day one. I’ve had to prove myself. There are always walls that come up and I have to smash them down, and then I walk away and go elsewhere. That’s why I always go to different sports and learn new stuff. But yeah, overall I am a strong woman and I know who I am. So it hasn’t broken me yet. I’m a warrior.” Bonnie has taken this attitude into the cage with her. She puts a lot of time into training. There is blood, sweat and tears. Her journey to the cage started way back in Levin when she was working at a gym with Dale and Loretta Winiana, “they taught me proper technique, posture and to be confident, not to be ashamed to stick your chest out. To this day I still have great form and I have never had an injury, so props to them. Yeeeahhhh.” Bonnie laughs loudly with this highly infectious laugh she has.
Bonnie said in the cage she unleashes the beast, “I just use all the negatives, all the bad things I have experienced, the negative things people say, because it has been a battle, and my inner warrior comes out on the field or in the cage. But I also use all the positives that come my way as this inspires me and inspires others to give them the courage to do exactly what they should be doing.” Bonnie gets lots of questions on Facebook, mainly from mums reaching out about their children ‘copping it’ but also about training in the gym and what does she suggest they (and children) can try. She said, “I love receiving questions like that.” I asked her what she wants other people to know about Aussie Hands kids and, in fact, any child with a difference. She says, “I just want them to know that they are okay, that there is nothing wrong with them. Just reach out. Don’t look at them in a strange way or judge them as they just want to be accepted like you do. They want to be motivated, pushed, told you can do it. Don’t shut the doors on these people because that is when they start losing confidence.”
My last question was, how do we inspire our Aussie Hands kids? Bonnie said that in this world we are living in now, saturated by media, we have these opportunities to, “see inspiring videos, join platforms that constantly upload these videos of inspiring kids and adults. Remind them never to give up. Stay motivated and surround yourself with, and be driven, by the right people – motivational, positive, uplifting people.” The Aussie Hands NSW group were lucky to meet Bonnie at their 2018 Christmas Picnic.
Thanks Bonnie for the wonderfully fun chat and inspiring words.
Go Bonnie in your third MMA cage fight!
Kate Doughty Steps Down as Patron after 12 Years
Kate Doughty is stepping down as Patron of Aussie Hands.
Kate, the inaugural Patron of Aussie Hands, is resigning to focus on her campaign for Tokyo 2020 Paralympics and her family.
Speaking on behalf of the Board, President Brooke Young said ‘Aussie Hands has been privileged to have Kate as Patron for more than a decade. She has inspired us, been an amazing role model and helped members take pride in who they are. In addition, Kate has been a strong advocate in establishing the Australian Hand Difference Register, co-founded with the Murdoch Children’s Research Institute.’
Kate said: ‘It has been an absolute pleasure to have worked with Aussie Hands Founder, Elizabeth Serpell and the team over the years, and I commend the team on all their hard work and tireless efforts to create what Aussie Hands is today.
I have watched young members of Aussie Hands grow into confident young adults, thriving in all they do and navigating their own path in life, whilst becoming wonderful role models for newer and younger members.
I feel very honoured and privileged for the wonderful opportunity that Aussie Hands has given me as Patron, and that my journey has inspired others along the way. It has been great to meet many wonderful families over the years, and I hope to continue to stay in touch and cross paths in the future.’
Kate invited Aussie Hands members to keep connected as she campaigns for Tokyo 2020 Paralympics via Instagram @katedoughty01.
Brooke says that Aussie Hands is seeking a new Patron, and an announcement will be made when Kate’s successor is appointed.
From the National Co-ordinator, Belinda von Bibra
Dear Aussie Hands members,
As we near the end of 2019 we reflect on the journey’s we have travelled together over the past year. Our amazing Aussie Hands community has continued to come together to provide support, grow our network, exchange information and support research initiatives into hand differences. In the new year key focus areas will be awareness, attraction, engagement and retention. The year 2020 promises new adventures and celebrations for us to share together and heralds the milestone of Aussie Hands turning 20 in 2020!! Woo hoo!! What an incredible tribute to you all.
Looking for gift ideas? Have you visited our online store? We have a variety of merchandise from useful aids such as the JarKey to the wonderful Little Miss Jessica goes to School book and fun stocking fillers like our biscuit cutter and yo-yo. https://www.aussiehands.org/shop/
I would like to take this opportunity to wish you all the very best of Seasons Greetings and I look forward with anticipation to the adventures ahead of us in 2020.
Belinda von Bibra
Limb Difference Awareness Week Media Release
18-24 October 2019
Limb Difference Awareness Week (18-24 October) highlights how adaptable, determined and innovative people can be.
Can you imagine what life would be like if you were missing fingers or your hand? Playing your favorite sport, instrument, going to work or using a smartphone might be a challenge! But having a hand or limb difference shouldn’t stop anyone from doing the things that most of us take for granted. Limb Difference Awareness Week (18-24 October) highlights how adaptable, determined and innovative people can be.
Around 3 in every 10,000 children are born with a hand difference. In addition, people can lose fingers as a result of illness or injury. Aussie Hands is an organisation that exists to provide a network of support, information and encouragement to help every person achieve their potential in life. Limb Difference Awareness Week helps us to celebrate difference, get inspired and see opportunities, not limitations.
Related to Limb Difference Awareness Week is a major research initiative at the Murdoch Children’s Research Institute called the Australian Hand Difference Register (AHDR). The AHDR is a database of children born with a hand difference. The purpose is to determine the prevalence and causes of hand differences. Launched in 2018, the AHDR has now been rolled out across Australia. The AHDR is co-funded by Aussie Hands and the Australasian Foundation for Plastic Surgery.
Brooke Young, Chairperson, Aussie Hands
Mob: 0417128097 E: email@example.com
https://www.aussiehands.org/?s=limb+difference+awareness+week | www.mcri.edu.au/ahdr
Welcome Belinda to the Aussie Hands Community!
From the Chairperson, Brooke Young
Aussie Hands is pleased to announce that Belinda von Bibra has been appointed as the part-time Aussie Hands National Coordinator, commencing in October.
Aussie Hands is pleased to announce that Belinda von Bibra has been appointed as the part-time Aussie Hands National Coordinator, commencing in October.
Belinda has been actively involved in community and health sectors during her career working within public, private and not-for-profit organisations. She is passionate about understanding individual and community needs and works collaboratively to develop innovative solutions.
She holds other roles with the Children’s Hospital Foundation in Brisbane and is a Non-Executive Director and Company Secretary for Suncare Community Services.
In the past, Belinda has worked as National Research Director for the Emergency Medicine Foundation, and successfully implemented a new funding system to expand their services and research initiatives. She managed the University of Southern Queensland’s commercialisation unit and led the team to raise its first multi-million dollar research investment to establish a Smart Assistive and Independent Living research program that focussed on addressing the barriers to adoption of technologies in communities. The program developed new models of care that enabled Queenslanders with special needs to remain independent and in their own homes.
Belinda studied at Queensland University of Technology and holds a Bachelor of Biotech Innovation and an MBA. She was awarded Outstanding Young Alumni award by QUT in 2006. Belinda is also a graduate of the Australian Institute of Company Directors.
As the mother of three young children and an auntie to a child with a hand difference, Belinda is passionate about encouraging all children to achieve their potential, build confidence and develop a positive self image. Belinda is based in Brisbane.
We are confident that Belinda’s experience and personal qualities, energy, positive approach and passion for Aussie Hands will help her connect effectively with members across Australia. The focus of the role is member communication, project management and ensuring that Aussie Hands continues to meet the changing needs of members.
Please join us in welcoming Belinda to the Aussie Hands community!
Chairperson, Aussie Hands
From the Chairperson, Brooke Young
Spring has sprung across Australia and it is also a time for growth and renewal at Aussie Hands.
We have some exciting things happening and I wanted to update you on 5 things:
1. Expanding our Volunteer Team
Aussie Hands relies on you! We exist to support people with a hand difference achieve their potential; share information and resources and invest in research about hand differences.
Thank you to all members who give of their valuable time to make our organisation a success. Whether you help out at events, work as an Interstate Coordinator, serve as a Board Member or share your stories on Facebook, we need you to achieve our objectives.
Our team of volunteers has expanded recently – we now have specialist volunteers in events, marketing and communication and administration. Some volunteers are Aussie Hands members and some are recruited through the Boroondara Volunteer Resource Centre, the Genetic Support Network of Victoria and through Aussie Hands members. Please join with me in welcoming James McClusky, Devni Kudewela, Lillian Nguyen, Vinnie Chen and Cassie Muller.
The Aussie Hands Office has had a spring clean and has moved to Level 3 of Ross House, located in the heart of Melbourne (247 Flinders Lane, Melbourne).
2. Australian Hand Difference Register (AHDR)
It is estimated that 3 in every 1000 children are born with a hand difference. The causes are not yet known, but the AHDR is designed to find our more. Aussie Hands is a partner in this research and is a co-funder. The following hospitals are now participating:
o The Royal Children’s Hospital
o Monash Children’s Hospital
o Sydney Children’s Hospital, Randwick
o The Children’s Hospital at Westmead
o Queensland Children’s Hospital (formerly Lady Cilento)
o Adelaide Women’s and Children’s Hospital
o Perth Children’s Hospital (formerly Princess Margaret
If you would like to be involved contact firstname.lastname@example.org. If you would like to make a donation, this can be done through https://www.aussiehands.org/donate/
3. Research Project – Impact of hand differences on children
Lucy McDougall from the Australian Hand Difference Register research team has completed a study on the impact of hand difference on children. The study reports that a child’s function, perception of appearance and social interactions are impacts and there are also positive aspects of having a hand difference. Find out more here.
Finally, thank you for being involved with Aussie Hands. It is a community that shares experiences, ideas, resources, inspiring stories and helps people with a hand difference achieve their potential. I encourage you to come along to events and workshops in your local area or get involved online through our Facebook, Instagram and LinkedIn pages.
Chairperson, Aussie Hands