Come and meet other young people!

Cleftstars usually meet four times each year. As Cleftstars is a group for young people, we don’t list meeting locations on our website. Contact us to find out the next meeting date: email evelyn.culnane@rch.org.au or call 0409 512 855).

Cleftstars on Ice! September 2011 get together

Cleftstars and Operation Smile

Cleftstars are partnering with Operation Smile in 2011, working towards an overseas leadership and training camp for two of the Cleftstars.

To find out more about Cleftstars, please contact Jarrod (jarrodm5@hotmail.com or ph: 0424 860 862) or Evelyn (evelyn.culnane@rch.org.au or ph: 0409 512 855).

Cleftstars – for young people affected by clefts

Cleftstars is for young people (aged 9 to 21) and their parents. It’s a social, personal and information network with people like you –  young individuals affected by the cleft condition. Cleftstars provides young people and their parents with the opportunity to share their story and journey, not only amongst the group but to the wider community who may be searching for avenues of support for older cleft-affected kids.

Cleftstars meet in person and have a private Facebook site.

To find out more about Cleftstars, please contact Jarrod (jarrodm5@hotmail.com or ph: 0424 860 862) or Evelyn (evelyn.culnane@rch.org.au or ph: 0409 512 855).

Cleftstars events from 2011

On 24 September 2011, the Cleftstars arrived at the wintery cold Ice House in Docklands ready for an afternoon of ice skating.  This was the first time for some but it didn’t stop the enthusiasm on the ice, even from our Cleftstar parents!  With his partner-in-crime, our youngest new Cleftstar, almost-9-year-old John couldn’t wait to get out there only to discover that it really wasn’t as easy as it looked!  Several falls later and probably a little wetter than when he first arrived, he was unperturbed and continued to have a great time.  This was the first Cleftstar event for three other new Cleftstars too – 9-year-old Caleb, 9-year-old Eliza and 14-year-old Sarah.  They quickly connected with some of our other gorgeous Cleftstars including Ruby, Kelly, Mark and Alyssa.  Sean and brother, Connor gave it a good go but thought perhaps that cricket was more their thing!  Most impressive were Judith (Alyssa’s mum) and Michelle (Eliza’s mum) who lead the charge on the ice!  The ultimate stars on the ice that afternoon were without a doubt, Eliza and Mark who stuck it out the longest, despite aching feet, ankles and so on.  It was definitely a great challenge for all and so much fun.

On 4 June 2011, the Cleftstars and parents enjoyed hearing from Dr Annette Da Costa, neuropsychologist with the RCH cleft team and Dr Andrew Greensmith, head of cleft surgery at the RCH.

Annette kicked off her session with a presentation about her research project which compares brain development, intellectual functioning and learning differences between children and adolescents with clefts and those with no clefts.  Her results have shown that children and adolescents with clefts generally have a high IQ however many seem to experience some difficulties in the areas of literacy and numeracy.  She is working towards developing useful strategies for teachers and parents so that they are better equipped to assist both in the classroom and at home.  Annette was very generous in providing individual strategies for the Cleftstars as they identified areas of learning which have proven to be challenging for them such as memory, the ability to verbalise a multitude of ideas spontaneously and the comprehension of more complex questions.

Annette then spent time alone with the Cleftstars talking about more personal thoughts and challenges faced by each of the Cleftstars at one point or another, including being singled out at school by peers for “sounding different” and “looking different”.  Many Cleftstars highlighted how alone they felt not having anyone to talk to and the importance of meeting other kids with clefts going through similar experiences.  Very poignant comments and issues were raised, inspiring much discussion and sharing.

Andrew was similarly inspirational as he presented on a recent Operation Smile mission to Mexico which he was involved with.  He shared very moving images of a mission to Mexico and his thoughts on the whole experience.  When he spoke about his personal passion for cleft surgery and being in a position to make a difference in the lives of many individuals affected by clefts, it was hard not to feel inspired by his story too.

Following this, Andrew spent some one-on-one time with our animated Cleftstars.  He was challenged by countless questions about what to expect from a surgical perspective and in turn, the Cleftstars had the opportunity to share their personal experiences and the effects that various procedures had had on them emotionally and practically (e.g. speech difficulties that some had acquired following jaw distraction surgery).  This lively discussion promoted even more interaction amongst the Cleftstars who went on to compare notes with each other, all the while having Andrew present to answer those tricky questions!  In amidst all the fun and laughter, the Cleftstars thoroughly enjoyed getting to know Andrew.

Today’s sessions with Annette and Andrew reminded me that Cleftstars is a very special and unique forum where our young people have the opportunity to be themselves and to be heard.

Evelyn Culnane
Co-Cleftstars Coordinator

On 19 February 2011 the Cleftstars and their parents met at the Royal Children’s Hospital (RCH) and were treated to two wonderful speakers within an informal, supportive setting.  This was a unique opportunity for our Cleftstars and their families to hear first hand from our speakers and to raise issues close to the heart.

Our first speaker was Professor Ravi Savariryan, head of the genetics service based at RCH and one of the leading project managers on the OzCleft Project.  Ravi opened up discussion amongst the group with questions that I’m sure many of us have thought about at some point, such as “Why did this happen to me?”and “Will my children be affected by the cleft condition?”.  Ravi then stated that currently, researchers and practitioners don’t know the answers to these questions despite the existence of several hypotheses.  However it is through projects like OzCleft (which happens to be the largest and most significant single research project that has ever taken place nationally and possibly internationally too), that they are hoping to inch closer towards some sort of understanding as to why and how clefts happen.  This research has the potential to have a significant impact upon genetics counselling and perhaps even one day, a greater understanding of how clefting occurs with a view to prevention in the future.  As you may imagine, Ravi’s thoughts inspired much discussion amongst us.

Our second speaker was Professor Michael Snow, orthodontist at the Monash Medical Centre and primary driver of the Boomerang Project which seeks to assist less advantaged families in some parts of South East Asian including Vietnam and Cambodia.  Michael’s passion for the Project was evident as he spoke about young individuals he had met during these missions and the impact that their stories had on him personally.  This discussion raised great interest amongst the cleftstar families and Michael is hopeful that they may come on board as volunteers on a Project Boomerang mission one day.  A large part of his work is focussed on promoting the ‘cleft cause’ and assisting families and young people here and abroad whenever an opportunity arises.  Michael also spoke about orthodontic procedures and the philosophy that ‘less is best’ when it comes to the need to delay or minimise surgery to achieve the best long term outcomes.  This of course raised difficult questions from Cleftstars particularly in relation to ‘looking different’ and ‘sounding different’ and the challenge of dealing with these issues as a young person.

Here’s some feedback about Cleftstars events:

From Sam, Cleftstar, aged 12