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[DanielleKessner]

CHERUBS Australia
Inaugural Get Together - Saturday 10th November 2001

After a lot of interest was shown throughout the CHERUBS Australian group, a decision to hold a national Get Together was made. A lot of effort went into planning and organising the get together held in Melbourne, Victoria, resulting in a wonderful day.

Our group is still relatively small with approximately 35 families. We had a total of 23 people attend the get together, with not everyone being able to stay for the whole day as well as dinner. We were very happy to have such wonderful support from our members. Australia is a large country making it difficult for members to attend when it is held so far from home. Our future plans include holding an annual get together in a different state each year.

We spent the morning of the get together sharing our stories and getting to know each other over coffee and cake. We broke for lunch returning to a ceremony held to honour and celebrate all of our cherubs.

The ceremony began with the lighting of a candle followed by a reading of a poem written in memory of one of our cherubs, Rhian. Next we played a song, “Together Again” by Janet Jackson, in memory of the Aussie cherubs who could not stay with us. A Dedication written for one of our cherubs, Harlee, was read to celebrate the lives of our surviving cherubs and the highlight of the day followed. One of our survivors, 4-year-old Madeline, performed a song and tap dance for us. The number chosen was Twinkle Twinkle Little Star, however OUR little STAR threw in a number of encores that included Baa Baa Black Sheep and Rock a Bye Baby. We won’t be surprised to see Miss Madeline’s name up in lights one day – but to us, she will always be a star . All of our Aussie cherubs names were then read out with a lovely piece of music played in the background. The ceremony was completed with a slide show presentation. This included photos of our Aussie cherubs, their names and the song “The Best Thing That Ever Happened To Me” by Gladys Knight & The Pips. A number of our members took part in the ceremony and did a wonderful job. The ceremony was simply beautiful with tissues being passed around throughout!

We had a craft activity set up for the afternoon. We made Christmas decorations to be taken home where we were then able to add a photo of our cherub and hang onto our trees come December. During this we discussed the future of our group and how we could best reach other Australian families affected by CDH. Some of the ideas and decisions discussed are currently being implemented and the future for CHERUBS Australia looks bright.

We met for dinner at a local restaurant where Bailey, a 2.5-year-old survivor, stole the hearts of the waitresses with his typical cherub charm . He even managed to get himself a free bowl of ice cream! Two of our “older” cherubs, Paul 35 and Anna 16, were able to share their CDH stories. It was the first time either of them had encountered anyone else born with CDH. It was wonderful to watch the two of them engrossed in conversation – finally having found someone who could understand what they were talking about!
A tired and emotionally drained group of people finally said good night at 11:00pm. A couple of families met up the next day for an outing, with the rest of us heading for home.

A huge thank you to all of the members who helped organise the day and thank you to those that attended to make it the great success that it was. We are all eagerly looking forward to next year .

Our inaugural CHERUBS Australia Get Together has officially gone down as a success!


Comments from attending members

I cannot begin to express my gratitude. Saturday was wonderful and personally very needed. Life has a way of sucking you into the mundane things. Although, you know what is important all the other things still need to get done. Like paying the bills, the ironing and you can somehow hide in all this. Thank you again, Anabel, mum of Julia.

Thanks for such a fantastic day on Saturday. Everything was so nicely planned out. It was great to finally put faces to names and meet new people. Everything went
smoothly, thanks again. Lynda, mum of Bailey.

I just want to say congratulations - you did a WONDERFUL job with the
Get-Together and I know that everyone present appreciated all the hard work
that was put into it. Saturday was a truly memorable day (even if it was
rather emotional). It was a great success! For my part, it was amazing to see other CDH kids and to spend time with Mums that have been through exactly (and more) than what I went through.... finally!!!! You begin to think you are the only person in the world who knows about diaphragmatic hernias! From just our little family's point of view, you must be able to see the worth of this wonderful support group!!! I have waited almost 35 years to spend time with families who understand
what our family has been through... but it was worth it and I am so glad
that we found Cherubs. Llona, mum of Paul.

I wanted to congratulate you on organising a successful get together for statewide Australian cherub families. It was wonderful to share our stories with people who actually understood the terminology, and of course the emotional stress. Thanks and Congratulations - I look forward to going to the next one! Sue, mum of Henry.

Thanks so much for giving us this chance to share our grief, our joy and our stories. It means so much to us all! Judy, mum of Harlee

[DanielleKessner]

CHERUBS Australia
Brisbane Get Together - Saturday 26th October 2002

CHERUBS Australia held it’s 2nd national Get Together in Brisbane in October 2002. A lot of effort went into planning and organising the get together resulting in a wonderful weekend. A very special thank you to Joanne Kjaersgaard and Linda West for all of their hard work and to Fiona Frew for her contributions. An extra special thank you to Emma West’s grandmother for donating the morning and afternoon tea in memory of her sweet cherub granddaughter.

Our group, although still relatively small, has almost doubled in size this past year and now has approximately 60 families. We had a total of 34 people attend the get together. Not everyone was able to attend on Saturday, but caught up with us either at dinner that night or for the family day on Sunday. It was wonderful to see such a large turn out and great support from our members. Our future plans include holding an annual get together in a different state each year. Perth will hold the 2003 Get Together and Sydney the 2004.

After introducing ourselves to each other upon arrival on Saturday morning, we broke into separate groups. One for the surviving families and one for the grieving families. This allowed all members to discuss their experiences with CDH openly and honestly without risk of upsetting others who had not experienced the same outcome. After breaking for lunch we returned to have a short ceremony to honour our cherubs. A candle was lit and the names of all of our Australian cherubs were read out. To complete the ceremony, we watched a slide show that featured photos our Australian cherubs. It was a beautiful way to end a lovely ceremony.

After the ceremony, we held a discussion on the future of our group and the possible legalities involved as we moved forward. Some of the ideas and decisions discussed are currently being implemented and the future for CHERUBS Australia is looking brighter than ever.

Throughout the day the older cherubs and cherubs’ siblings helped out by baby-sitting the younger cherubs. This allowed the parents to relax (at least a little bit!) and get to share their CDH experiences. The children were truly wonderful and made everyone very proud.

We met for dinner at a local restaurant and were given a good laugh by the confused looks of the staff. The parents of one of our cherubs ordered a bowl of ‘plain pasta’. We all know how fussy children can be with food and our cherubs are certainly renowned for this! “Plain pasta?” came the confused reply. “Yes, just pasta with nothing on it. Just cook it and put it in a bowl.” A tentative “OK” was given. Everyone received their meals and still no ‘plain pasta’. We could all picture the staff standing around in the kitchen scratching their heads and trying to figure it out. Finally the ‘plain pasta’ arrived – sprinkled with a green garnish! “YUCK, I don’t like that green stuff,” cried the cherub. In the end, we worked it out 

The next day we met for a family day at South Bank. The children got to swim in the beautiful man made lagoon with the dad’s keeping guard while the mum’s hit the outdoor market. After a lovely day our tired and emotionally drained group said their goodbyes.

A huge thank you to all of the members who helped organise the day and thank you to those that attended to make it the great success that it was. We are all eagerly looking forward to Perth 2003 – hope to see you there .

[DanielleKessner]

CHERUBS Australia
Perth Get Together - Saturday 4th October 2003

CHERUBS Australia held it’s 3rd national Get Together in Perth in October 2003. A very special thank you to Cazz Gould for all of her hard work putting together a great weekend for all our attendees.

We had a total of 24 people attend the get together this year. While numbers were down on previous years it was still a great turn out as Perth is so far away from the rest of Australia. We had members from Queensland, New South Wales and Victoria fly across the country to gorgeous Perth to attend the weekend and then spend a few days checking out the sites of Perth and its surrounds.

After introducing ourselves to each other upon arrival on Saturday morning, we broke into separate groups. One for the surviving families and one for the grieving families. This allowed all members to discuss their experiences with CDH openly and honestly without risk of upsetting others who had not experienced the same outcome. After breaking for lunch we returned to have a short ceremony to honour our cherubs. A candle was lit and the names of all of our Australian cherubs were read out. Throughout the day we had the slide show that featured photos our Australian cherubs running.

After the ceremony, we held a discussion on how CHERUBS Australia was travelling what the future held for us.

Throughout the day the cherubs and cherubs’ siblings were looked after in a separate play area. This allowed the parents to relax (at least a little bit!) and get to share their CDH experiences. The children were truly wonderful and made everyone very proud.

We met for dinner at a local restaurant which had a great play area for the children. After we finished a few of us went for a drive to Kings Park to a wonderful night time view of Perth.

The next day we met for a family day at Kings Park – wow that place is amazing! The children got to play while the adults all sat around talking. After a lovely day our tired and emotionally drained group said their goodbyes.

A huge thank you to all of the members who helped organise the day and thank you to those that attended to make it the great success that it was. We are all eagerly looking forward to Sydney 2004 – hope to see you there .

[DanielleKessner]

2004 CHERUBS Australia Get Together – Coogee Sands, Sydney

Our 2004 Get Together was held at the Coogee Sands Resort at Coogee Beach in Sydney. The staff and management of the Coogee Sands ensured that we had a wonderful stay with them and could not do enough for us. Morning and afternoon tea were provided for the day as well as the conference room which was well set up for our use. Alicia, Kristine, Kirrily and Lynda out did themselves in their organisation of the event. Members came from as far as Townsville and Perth and a wonderful time was had by all.

Alicia arranged for us to have Drs Nadia Badawi and John Levison as our special guest speakers and we felt very honoured to hear the latest in data and research on CDH. One of our fundraising efforts will be to assist John to travel to Boston Children’s Hospital in order to learn as much as he can from medical personnel who have set up a clinic specifically for CDH children. John and Nadia’s aim is to set up a similar clinic here in Australia.

We were also lucky enough to be able to discuss individual health concerns of our surviving Cherubs with Nadia. Nadia has also been able to assist some parents in acquiring referrals to specific specialists. What would we do without these wonderful people who are so willing to give of their time for our cause?

After an exhausting but informative day, we dined at a wonderful restaurant, walked along the esplanade, enjoyed a late night drink on the rooftop of the resort and then headed to bed (well, some of us anyway!). Breakfast was enjoyed in a beachside café watching a Nippers’ Carnival take place before heading off to the airport/loading the car for our trips home.

Back to Melbourne in 2005 where it all started in 2001. Hope to see you there!

Comments from attending members

Thanks to everyone who organised the wonderful Get together in Sydney this year. What a wonderful location right on the beach at Coogee Sands! I found the weekend very informative and therapeutic; a chance to be with other people who have been through similar experiences. Sometimes I forget how far we have come. I was especially impressed with the guest speakers. How wonderful to have doctors researching CDH!
The weekend stressed for me, as the mum of a surviving CHERUB, the importance of remembering how far we have come and where we are going. Talking to other mums was so beneficial for follow up health concerns and expectations. I will definitely be going to the next one.
Judy Scherrenberg, mum to Harlee (LSCDH, 1999)

We had a fantastic time at the CHERUBS Australia Sydney Get Together. What an awesome place, the conference room was terrific and the guest speakers were fabulous, they answered all our questions and showed that they want to move forward with us. It was great to catch up with everyone who we had met previously and to put faces to names to families that we hadn’t met before. Thank you everyone for making this weekend one of many we will remember. Lynda, Wayne and Bailey,NSW

Sydney was great. It was like a mini holiday with educational learning thrown in. The effort on the behalf of the girls organising it was outstanding, the accommodation was exceptional and the day itself was so very rewarding. It gave me energy and hope. I loved meeting up with old friends and finding new ones. Brilliant weekend.
Joanne Kjaersgaard, wild child’s mother (8/5/90)

I had great fun. I met some other cherubs like me and we got along really well. I met parents and doctors who were interested in kids like me. We had lunch in a park near a beach and we did some shopping and looking around. We talked and talked and talked. I would love to go again.
Ariana (the wild child)


Thank you to the organisers of the CHERUBS Australia Sydney Get Together. It was a great opportunity to meet other members and to catch up with families who have attended previous gatherings. The guest speakers were excellent and the conference room and accommodation were wonderful. I had a sensational time in Sydney and can't wait for the 2005 Get Together. Danielle, Vic
.
Lynda, Alicia, Christine and Kirrili – what a fantastic job you did at organising this event. It was wonderful to learn of the latest data from John and Nadia and to speak privately with them on a range of issues. But what I gained most of all was an incredible feeling of support and compassion. I felt humbled by the strength and love shown by the attending grieving parents and it only gave me more reason to work harder towards helping to find answers. Can’t wait for 2005…. Melbourne, here we come! Wendy, Brisbane

[DanielleKessner]

MELBOURNE 2005 GET TOGETHER

CHERUBS Australia had its 5th Annual Get Together on Saturday 22nd October 2005. It was held in the 10th floor conference rooms of the Royal Children’s Hospital (RCH), Melbourne – the same venue as our very 1st Get Together.

On the Friday night before the Get Together, a few members met for dinner at a La Porchetta’s restaurant. Even though there was only a few of us it was an interesting evening. Bailey, Harrison and Thomas played with the salt and pepper, spreading it all over the table. Thomas decided to test the theory that pepper makes you sneeze – by putting it up his nose! To his surprise (and distress!) he discovered that it burnt.

We arrived at 9am on Saturday for the Get Together. We were fortunate enough to have four FANTASTIC babysitters (and two older children as assistants!) look after the children all day. There were planned activities as well as a visit to the Starlight Room and play time in the fully enclosed outdoor playground. Having the babysitters allowed the parents to focus fully on our guest speakers and get the most out of the day.

Dr Michael Stewart is a neonatologist who works at the RCH and also with NETS (emergency transport) at the Royal Women’s Hospital. He delivered a wonderful presentation on the recent changes the RCH is using to treat CDH babies. It was a joy to hear that in the past couple of years, survival rates have increased dramatically.

We were also lucky enough to have two adult CDH survivors as guest speakers. Anna and Melissa shared their experiences with the parents and were able to give them an insight into how it felt to be a child born with CDH.

On Saturday night a number of us met for dinner at The Moreland Hotel which has a sensational indoor playground to help keep the kids occupied. It was a relaxing way to end the day and get to know each other a little better.

Our final ‘formal’ meeting was a family day at Scienceworks. Everyone had heaps of fun before saying their final good byes – until next year in Brisbane of course! ;-)

“It was great to catch up with the members we already knew and to meet new members. We had a great time and were very impressed with the organised babysitting. See you all again next year in Brisbane!” (Lynda and Wayne, NSW)

“It was a fantastic day getting to meet everyone and putting faces to names. The kids (especially Sarah) enjoyed meeting other cherubs.” (Lorraine and Kai, VIC)

“Thank you to everyone who helped make the Melbourne get-together fantastic. We had a great time meeting new friends and seeing old friends. It was a pleasure meeting Melissa and Anna, thank you for being brave enough to tell complete strangers, well friends, your stories. Chelsea-Rose and Liam had a ball with the babysitters, so a huge thank you to them.” (Sharon and Damon, WA)

“It was a great experience to have my daughter Anna (20) talk about growing up with CDH. As a mother I enjoyed having Anna’s sisters there to join in the discussion. Anna’s dad and aunty also joined the discussion.” (Viv, VIC)

“I really enjoyed the Melbourne get together and it was great to finally meet other people with CDH. Thank you to all the parents for making me feel comfortable when sharing my story I hope in some small way it helped. I look forward to catching up next year in Brisbane.” (Melissa, NSW)

“This year’s get together was harder than last years because of being the only grieving family (other than Danielle) there and seeing all those little cherubs running around having a great day. I found it hard to relate and to talk to everyone there so I found some comfort in the families that I knew from the Sydney get together. Maybe because when I met these families I had the support of other grieving families. Don't get me wrong we had a great day and learnt a lot about the new procedures saving cherubs lives. (But sat there saying if only!) Having not reached surgery with Brayden I was amazed to hear of all the ongoing 'problems' that the cherubs have to deal with, because all the information that we could find or where given only led up to surgery and none was about after surgery, I was always under the impression that after surgery they had no problems and the 2 'Older cherubs' opened my eyes and made a great case for the survivors booklet that is being put together.
We did have a good time but next time I will bring my kids if only to help distract me for awhile.
See you all next year in sunny Queensland.” (Kristine and Craig, NSW)

“I enjoyed watching all the young kids run around and having fun. It was excellent meeting Melissa (another adult survivor) to share our stories and experiences with each other and to acknowledge different complications.” (Anna, VIC)

“The Saturday night family dinner was a great way to finish off the day. To get together again with such a wonderful group of people who completely understand where you are coming from was indescribable. The Vella family appreciates everyone being so open, honest and ready to share.” (Karen and Michael, VIC)

“It was great to catch up with old friends and meet new ones. I can’t thank the babysitters enough for volunteering their time – it made a huge difference for the parents. I thoroughly enjoyed all the guest speakers and was so excited to hear from Dr Stewart about the increased survival rates of CDH babies being treated at the RCH. I can’t wait for Brisbane!” (Danielle, VIC)

“The Saturday Get Together at the RCH was a great day; catching up with old friends and finally putting faces to everyone from their emails. Meeting Melissa and Anna and listening to their experiences as they grew up gave us an insight into what may lie ahead. Sunday at Scienceworks was a relaxing way to see everyone again and say farewell until next year. Thanks to everyone from Victoria who made this years Get Together such a success.” (Maryanne and Carl, WA)

“Melbourne was a blast. I loved seeing my friends, the kids, matching names to faces I hadn't met yet. I loved seeing and talking to Melissa and Anna (the adult Cherubs) and just being around people who I share an important part of my life with. So well organised, from the location to the babysitting. Congratulations to all of those who organised it. A brilliant
job. Now if we could get Brisbane weather, Perth tourist spots, Sydney's view and Melbourne's facilities.....wow. Thanks to all who made the day a very special one.” (Joanne, QLD)

“The weekend was great and meeting the two older cherubs was very interesting. It was also great listening to Doctor Michael Stewart and hearing the new treatments for CDH babies. Jack loved meeting the other children and seeing that they all had a scare on their tummies. I also thought Kristine did a great job reading out that poem. And of course the babysitters they were wonderful! A huge thanks to the organizers. See you next year in Brisbane.” (Jasmin, VIC)

“The get-together was just so fantastic! We had a ball. Thanks so much!” (Sas and Tony, VIC)


SPECIAL THANKS

CHERUBS Australia would like to extend their thanks to the following people for their help with the Melbourne 2005 Get Together:

The Babysitters – Julie, Tanya, Anthony and Chris

The Organisers – Danielle, Sas, Karen and Viv

The Guest Speakers – Dr Michael Stewart, Melissa and Anna (adult CDH survivors)

All of the local members for donating items for morning and afternoon tea.

GSNV for the use of the conference rooms

All attendees – especially those that traveled from interstate to join us.

[DanielleKessner]

CHERUBS AUSTRALIA FORUM
Brisbane 2006

The sun shone on Friday, the day before our Cherubs Forum. We arranged to meet anyone who would be in town, to gather up at South bank Parklands. South Bank is a public area that has food galore, great areas of grass, kids’ playgrounds and a wonderful free beachside pool, well protected by a lifeguard.

People started arriving around lunchtime. Before long we had several kids with several adults, eating a yummy lunch and looking forward to a swim in the pool. After lots of sunscreen and a few hours in the pool, it was decided we all meet for dinner in Browns Plains. In those few short hours we managed to gather a few more members, so dinner turned into a 20 person affair.

It was a perfect sunny Queensland day topped by a great dinner. Thanks to all those who came and made our Forum a very successful one.
Jo Kjaersgaard

Wow what a day, well done to all our Brisbane organizers. For those of you that were unable to attend the “Forum” in Brisbane this year it was at the Greenbank RSL on Saturday 19th October 2006. We all got to have a bit of a chat before our day got started. We met up with old friends and create new ones as well.

Once the kids went off to the Kids’ Room we got settled into the first half of our day. We started off with a Welcoming from Jo and then watching a CHERUB Dedication where we saw photos of our CHERUBS whilst listening to a beautiful piece of music. We also had our child’s name on a stick which we all stood in some sand

We had a guest speaker Dr Frank Carmody an Obstetrician / Gynecologist who had some very interesting information on Nuchal Translucency Testing. This test is done between 11 and 13 weeks of pregnancy. The aim of the test is to determine if you are at high risk of having a baby with a chromosomal abnormality. It does not diagnose an abnormality; it only finds those who are at high risk who may then opt for further testing. Dr Carmody also spoke of some of his other experiences within his practice. Dr Carmody stayed for morning tea and a chat.

Then we got the kids and had our group photo and scrapbooking time for those who needed to add their CHERUB to the Album.
Then we divided into our groups for discussion time (Surviving and Grieving).

After lunch we put the kids back into the Kids’ Room and we had a Surprise guest speaker to talk about their Journey. Much to our surprise it was Maryanne and Carl, they had just returned from the USA where they spent sometime in a Clinic with Rebecca and Damon and Sharon Knott and their son, Liam. The focus was to get their children to want and start to eat. They finally had success at the clinic and returned home to share this experience and to really put in place what they had learnt and accomplished.
By 4 pm the day was drawing to the end we had a quick afternoon tea with the kids then the cleaned up the wonderful room we were able to use.
Lynda Viset

I would just like to take this opportunity to thank our Queensland members for organising a wonderful member forum. I had a great time catching up with old friends and was delighted to meet a number of new families. For the first time I sat with the surviving families during the group split which allowed me to develop a greater insight into the struggles some of these families face on a daily basis. Thank you to all the members for sharing their stories with me and increasing my knowledge of CDH. Can't wait until next year’s forum rolls around!
Danielle Kessner, Victoria