Quick Links:
- Halfway Across the World - Mariam's Journey
- Out and About
- Major Sponsor - Refined Real Estate
- Shooting for the Stars
- Cleft-Warrior Briana - Speaking from the Heart
- Leave a Mile of Smiles by Giving Regularly
- Rest Peacefully, Katie
- Bristol Cleft Fellowship
- Research Participants Needed
- Craniofacial Australia AGM
Halfway Across the World -
Mariam's Journey
Pakistan-born Mariam Saleem was born with Nager Syndrome, a rare and debilitating condition that affects development of the lower face, jaw and mouth.
At 6 months, Mariam was treated for Patent Ductus Arteriosus (PDA) – a heart defect caused by problems in the heart’s development.
However, Mariam still had difficulties breathing and feeding due to limited jaw movement.
Dad Saleem recalls: “In my country there was not facilities and it was not even possible to get Mariam properly diagnosed.
“Up to that time, her jaw abnormality was not the prime focus of the family. After being examined by a Pakistani-based Maxillofacial surgeon, we were advised to delay any treatment until the age of 6. Mariam was fed through a Nasogastric Tube and spoon fed for almost two years.”
Mariam experienced frequent bouts of illness. The cost of accessing medical treatment presented the family with financial hardship.
At the age of 6, the family set out to obtain a formal diagnosis. A referral for assistance went to various Craniofacial Units around the world. The Australian Craniofacial Unit in Adelaide, headed by Professor David David AC, answered the call.
The family visited Adelaide in 2013 and met Professor David, who referred Mariam for a complete genetic assessment. Mariam was eventually diagnosed with Nager Acrofacial Dysostosis (Nager Syndrome).
► Nager syndrome is a rare condition that mainly affects the development of the face, hands and arms. The severity of this disorder varies among affected individuals.
Growing up, Mariam struggled with her self-perception, and others’ perception of her. Because of this, she gradually stopped using her voice when out in public.
Saleem explains: “Due to limited jaw movement, her voice is not audible to everybody. That’s why she stopped talking.”
The family returned to Adelaide for the first stage of treatment in 2016, when Mariam underwent a mandibular distraction to clear her airways, help with her breathing, oral hygiene and speech.
► Mandibular distraction, or jaw distraction, is the name for a surgical method of lengthening a small or recessed jaw.
The next course of treatment was to take place at the age of 15, when Mariam’s facial bones matured. When this time came, the family struggled to access proper healthcare and financial assistance in Pakistan. “I couldn’t afford any of it. As a father, this was a really unimaginable thing for me.”
Saleem again tried reaching out to Prof David: “To my luck, he responded. He came to my rescue and referred me to Craniofacial Australia.”
The Saleem family found relief in Craniofacial Australia’s Patient Support program, where people living with craniofacial conditions can apply for financial assistance.
Craniofacial Australia coordinated Mariam’s treatment plan, specialist team and accommodation arrangements. Thanks to the generosity of our donors, Craniofacial Australia also subsidized travel costs for the commute to Adelaide. With a dynamic support and care team alongside her, Mariam underwent another round of surgery in Adelaide, July 2023.
“I have no words to express my gratitude for the support and kindness extended by the Foundation. I hope that Mariam will be able to lead a life like normal people.
“We are indebted to Australia, the Australian people, Craniofacial Australia and especially all donors, as without their contributions, help would not have been possible.”
We gratefully acknowledge the following individuals and organisations for the care and support of Mariam and her family:
Dr Greg Miller
Australian Dental Foundation
Ronald McDonald House Charities Adelaide
Dr Benjamin Grave
Australian Craniofacial Centre and Craniofacial Australia Board Member
Thank you to the Saleem family for bravely sharing their story.
Out and About
Thank you to our valued community for joining us for our recent events: History Festival: “The Wonder of Changing Faces: The Australian Craniofacial Unit” and our Winter Wonderland Long Lunch.
There is no better feeling than being able to connect with each and every one of you, in person. Your support at these events helps us to continue our vital work in serving the craniofacial community. Thank you.
We acknowledge the following organisations and individuals for their support at our recent events:
AUCTION & RAFFLE SUPPORTERS
North Adelaide Dental Care
People’s Choice Credit Union
Elder Fine Art & Antiques
Koko Black Chocolate
CAPTURED by Anna
Gelista
Isobel Redmond
Phil Hoffmann Travel
TyreXperts
Artist Nadia
Sally Mitchell & Austin Kitschke
Lead with Play
The Crabb Family
Blossom Box Co
Mercato, Campbelltown
Charlesworth Nuts
History Festival
Winter Wonderland Long Lunch
Jamie and Mark made the trip from Victoria to South Australia for our Long Lunch and donated their 200th Cranio Warrior T-Shirt! That’s 200 smiles for our Cranio Warriors. These Tees are included in Care Packs that we send to families ahead of surgery. Thank you Jamie!
Major Sponsor - Refined Real Estate
As Major Sponsors of Craniofacial Australia, Refined Real Estate have donated to our Foundation year after year (including an incredible $12,000 cheque at our Long Lunch!). They volunteer their time at events, provide Auctioneering services and support us in ways that are at the heart of all we do. Their commitment to community is not only seen, it is felt.
Our heartfelt thanks goes out to the entire team at Refined Real Estate.
If you can support those who support us, please do. Next time you’re thinking about buying, selling, investing or renting property in South Australia, we invite you to reach out to the team at Refined Real Estate.
Shooting for the Stars
With the help of Craniofacial Australia, newly signed Adelaide 36ers forward Alex Starling made a dream come true for a brave young basketball fan.
Starling had a surprise training session with cranio-warrior Noah Hallam. Noah travels to Adelaide up to 12 times a year for medical appointments but this trip turned out to be a special one for the 8-year old from Whyalla.
Mum Bree says, “He lives and breathes basketball. He goes to bed with basketball cards in his top pocket or under his pillow.”
Ms Hallam said she was grateful for the Foundation’s ongoing financial support.
“They have helped us immensely. It’s a tough gig and we’ve been doing it for nearly 9 years. He does miss a lot of school due to us coming to Adelaide quite a bit.”
Bree hopes greater awareness will lead to greater inclusion. “I always say to Noah, ‘Why fit in when you were born to stand out?’”
Thank you to ABC News for covering this story, helping to shine a light on our cranio-community.
Cleft Warrior Briana -
Speaking from the Heart
Adelaide cranio-warrior Briana made her public speaking debut for Craniofacial Australia this year.
Growing up can be hard, but for Briana, the challenges of growing up with a cleft lip were further punctuated with looking and sounding different, countless surgeries and more. Briana’s story is one of overcoming adversity. She is peeling back the layers to find her voice and place in the world.
Thank you Briana for sharing your voice with such dignity, brilliance and courage.
Fun Fact: Briana was the first baby born by Caesarian at South Australia’s North Eastern Hospital and the first baby born there with a cleft lip!
Leave a Mile of Smiles by Giving Regularly
Have you considered becoming a regular supporter of Craniofacial Australia? This means you give in regular intervals, supporting countless people with your compassion.
You can set up a direct debit arrangement with Craniofacial Australia to give your chosen dollar amount, regularly. With your giving spread over time, we hope this makes it more affordable for you too. If your circumstances change, it is easy to change or cancel your arrangement with us – anytime.
Rest Peacefully, Katie
We pay our respects to Katie Davies.
Taken too soon, Katie was a valued Ambassador for Craniofacial Australia. She volunteered countless hours for our charity, even flying interstate for functions - all in the name of helping others.
Katie, you are a remarkable, selfless woman and your generosity will live on through the many in our craniofacial community who will benefit from your support of Craniofacial Australia. Thank you.
We send our heartfelt condolences to Katie’s family. She will never be forgotten.
Bristol Cleft Fellowship
Australian Candidate Wanted
Since establishing the Australian Craniofacial Unit in Adelaide in 1975, Prof David has helped more than 17,000 people.
The Foundation’s commitment to extending medical knowledge underpins our Education program. Every year, our Foundation funds a Fellowship in the United Kingdom. The Fellowship gives doctors the opportunity to receive specialised training at South West Cleft Services Bristol (UK), in the complete range of cleft lip and palate surgery.
2023 Bristol Cleft Fellow Nitisha Narayan says of her fellowship:
“I have had an incredible overall experience. The surgical component consisted of very useful hands-on experience repairing clefts on the lip and palate, speech surgery, alveolar bone grafts, jaw surgery and cleft rhinoplasty. This has given me confidence in preparing for my career in cleft surgery. The clinical work consisted of going to multi-disciplinary clinics, speech investigation clinics, alveolar bone graft planning and orthognathic clinics and operating theatre activity three times a week. I have also presented my research projects at several scientific meetings, both national and international. I am incredibly grateful to Craniofacial Australia for this opportunity and would like to thank all the generous donors for supporting this charity.”
We are taking expressions of interest from Australian doctors for the 2024 Bristol Cleft Fellowship, with the required knowledge, skills and attitude to start independent practice as a consultant cleft surgeon within a multidisciplinary cleft team.
Research Participants Needed
Craniofacial Australia is funding an important research project at the University of Adelaide that aims to determine both the psychological and social support needs of families in Australia, following a craniofacial diagnosis.
The outcome of this research will help to provide improved, high-quality, person-centred health care services for craniofacial patients and their families.
Prof. Roberts (pictured right) and Dr. Osborn (pictured left) from the University of Adelaide are heading up this research study. They are seeking parents of children with any craniofacial condition.
If you are willing to talk about your experiences around support and information, from time of diagnosis through the various developmental milestones (starting preschool, high school etc), they would like to talk to you.
Important information:
- Participants will be de-identified
- The interview will be recorded
- Interviews scheduled around participants’ availability (including weekends, after business hours etc)
- A copy of the transcript will be provided
- The family will receive a $60 gift voucher for their time
- Interviews will be conducted online
- Open to participants Australia-wide
Your lived experience is important and will serve to help cranio-families in the future.
Craniofacial Australia AGM
The Craniofacial Australia Annual General Meeting will take place on Wednesday 8 November 2023 at the David Roche Foundation, 241 Melbourne Street, North Adelaide, starting at 6pm.
