DEBRA 2007 CONFERENCE SYDNEY

This is really to say a great big ''thank you'' to everyone involved in making this wonderful conference come together.

This was the first conference that I and my whole family have attended. Our son Lachlan is now 17 months old and has EB, and this conference gave us all the perfect opportunity to learn more about this rare skin disease and to really see what DebRA is all about. It was also nice just for a few days not to have to explain to anyone what our son has got.

This was also a fantastic opportunity to put people's faces to names and meet with other parents. Even though I now find every case of EB seems to be so different, we all have one thing in common and it seems like we are all striving for the same things lobbying the government and getting EB out there for the public to see and support.

Another big thank you to DebRA and your anonymous donor who generously organised the helicopter flights. This was a first for all of us and it was a big highlight. We are so glad to have had the opportunity and see just a little piece of Sydney.

So thank you again DebRA yes, I've said it again! For a wonderful informative weekend with heaps of great food, great accommodation, great information and lastly, great people. We look forward to the next big one! Keep up the great work!

The Woodward family: Tagen, Darren and Lachlan
Here is a photograph of all three of us after the helicopter ride!

 

Hi this is Gavin reporting from New Zealand on the third EB camp, August 2007.

I arrived in Auckland on August 17, 2007, and made my way to the Copthorne Hotel where the DEBRA New Zealand conference was being held. By the time I had checked in and made my way back downstairs, dinner was just about over. I met up with Prof. Marcel Jonkman from the University Medical Centre, Groningen, The Netherlands. Prof Marcel Jonkman was a very nice and funny guy who liked to joke around when some of the talks were going on. Afterwards we all gathered at our tables and had a chat to each other about what we had been up to since the last camp. After dinner we had a slideshow of funny photos of people who were at the conference and we all stood up and introduced ourselves and explained where we came from and what the photo was about. Mine was from the first camp where we were in a little pub after canoeing and I was playing pool using an ashtray to steady my cue stick so I could hit the ball.

I went back to my room at about 10.30 pm and was ready for a good night’s sleep but because it was a Friday night everyone else in town wanted to come out and party so it was very noisy and I did not sleep as well as I wanted. I stood at the window every now and again just watching everyone pass. The next day I missed breakfast so I went downstairs to the conference where people had already started doing their talks. Some of it was on genetics and it just went straight over my head. We had a talk on new types of dressings that are out or are on the way. I have been using SSD cream for as long as I can remember and I would like to try some of the new dressings and even the medi honey that I heard a few of the other EB people were using.

After dinner a band that played and everyone got up to dance but I went up to my room to try the sleep thing again. It took a while but I think I was that tired and worn out I just nodded off some time in the early morn.

On the Sunday there were a few more talks and then after lunch a group of us went to the Sky Tower, where we went up and had a look around.

PHOTO: Liam Patterson, Ashley Worthy and Gavin O’Brien at Sky Tower, Auckland, watching some people from their group bungee jumping.

Afterwards we had coffee and a chat about things and later we went for a walk to where we were to have dinner, stopping for a photo with all the group with Sky Tower behind us all lit up and very beautiful. We ate at a Korean restaurant where you cooked your own food on these little gas cookers. The food consisted of different types of meat and seafood and all sorts of vegies with side dishes of rice and other finger food which was different and very tasty. At about 9.30 pm we headed back to the hotel where we all got a good night’s sleep, but some of the group decided that they weren’t tired or cold enough so they toddled off to a place called the ice bar where you can only spend 20 minutes at a time because of the freezing temperature.

Early on the Monday morning the first day of camp we were up and ready to go as we had to be at the airport to fly to Taupo where Deanna was to pick us up, and then we drove to National Park. When we arrived we were given our room keys. I was in the same room as I was last year, number 4, but a few things had changed. There was now a kettle and toaster and hanging from the wall above the desk was a flat screen TV, though the reception was not the best. We had arrived at about 3.30 pm and we were waiting on others who where driving to camp. My dressings were in one of the vans and I had planned on doing a full dressing change when they got there but they decided to take a detour and do some sightseeing along the way, so by the time they arrived and we had dinner it was too late to start doing dressings, so I had to get up at 7 am the next morning and do them. While doing my dressings I had Prof. Dedee Murrell, head of the Dept of Dermatology, St George Hospital and University of NSW, Sydney, come in and look at and take some photos of my wounds. She pointed out four spots which she said I should have biopsies of to check for cancer cells. That freaked me out but I will go and have it done and see what the outcome will be.

After doing my dressings I and my helpers made our way up to the ski field where the others had already gone. We had to wait for Deanna to get us our lift passes so that we could go down to where the others were. Then we went up the mountain. I was FREEZING so I sat in the café in a corner, sitting in the sun to warm up. After a couple of hours of sitting there I was starting to thaw but it also made me really relaxed. I could have fallen asleep. Unfortunately I was not able to ski this year because of some big sores on the wrong part of my back, which was disappointing. But it was good to see the others who had been able to get out there and not fall over too much.

PHOTO: ‘Spud’ the instructor, Mary Alice Nading, a med student
from USA, and Gavin O’Brien at Mt Ruapehu.

Wednesday came around and on this day we were river rafting, but after seeing the slideshow that was running I pulled out straight away. Liam and Rob were nearly going to do the same but after a while they decided they would brave the river and take the risk of getting really wet. We made the small trip to the river in the bus with rafts in tow. Ash was keen to paddle so he was set up on a foldable deck chair that was strapped down so it would not fly out of the boat, not that that would have mattered to Ash! Liam and Robert were in the third raft and Liam was also put into a deck chair but into the middle of the raft so he never got wet.

I went back to the rafting shop with the man who runs it and we did a few things with the bus and then headed back to the shop where he soon found out he had no keys to get back in. He managed to get some and we were back in business. About 10 minutes after we got back he was off again to pick up our intrepid rafters and bring them back to the shop where we all had a good feed and warmed up. Soon after lunch we made our way back to National Park where we sat around the fireplace waiting for dinner to arrive.

(To be continued)

Thank you to the following people for their lovely donations:

• Wendy and Brett for donating NRL football tickets, which were put to good use.
• John Attard for a $200 donation.
• Ken and Sally for their very generous donation, making it possible for Gavin to attend the NZ camp this year, to buy much-needed dressings for all members, and to support a Meals on Wheels expense.
• Alan’s Mobility Sales and Service and Mr D McNicol for helping to purchase a much-needed gopher battery.
• Tagen for great fundraising and collecting over $200 at her workplace.
• Jenny for supporting one of our members with quality of life with her lovely friendship and purchasing of furnishings.

African Violet Show

The African Violet Society of Queensland Inc. are holding their annual show again. This wonderful organisation generously supports DebRA-A Qld every year and it would be good if we could support them by visiting this spectacular show. Anyone interested in African Violets and their Gesneriad cousins is invited. As in past years, there will be a huge number of beautiful and unusual African Violets, with some very large plants. Mature plants, starter plants and leaves will be on sale, as well as potting supplies and craft items. Experienced growers will be on hand to answer any questions about the cultivation of plants.

Show Details

Saturday October 27, 2007, 11am to 5 pm
Sunday October 28, 2007, 10 am to 4 pm
Brisbane Botanic Gardens – Auditorium – Mt Coot-tha
Admission $3 each

Enquiries, phone (07) 3300 4130 or (07) 3398 9355
Email africanvioletsocietyqld@yahoo.com.au
Website www.africanvioletsocietyqld.happyo.com

Annual General Meeting

The AGM was held at the Sunshine Coast this year over lunch at the Rydges Oasis, Caloundra. There was a great turn-out and it was a good opportunity to catch up and meet new members. At the end of the luncheon, the waitresses said they had never met such well-behaved children.

The same committee are in place this year: Kathy Hagan (President), Sue Holley (Secretary) and Paul Galvin (Treasurer). Welcome to all of our new members and we look forward to meeting with you again soon.

Next Meeting

Saturday March 8, 2008, at 11 am in Brisbane. Reminders will be sent out beforehand.

Fundraising

DebRA-A Qld have special butterfly tea-towels and greeting card packs for sale at $10 each if anyone is interested. They will make wonderful Christmas presents as they are easy to post and useful for everyone (well, most people!). For more information visit our website www.debra.qld.org or phone Sue on (07) 46 937 003.

Jenny Clifford has had the following verse for a long time and not sure where it came from but would like to share with others…….

To the Mother of a special child

I’m sending you a special child, to cherish in My name
For you to love with all your heart and teach him just the same
For he is not like other babes, nor will he ever be,
But can you love him just the same and take good care of him for Me.

He may not see, or run, or learn as others do,
But he’ll be yours and he will take his guidance all from you.
The road is hard, he’ll break your heart, you’ll cry a million tears
But I promise when he smiles at you, the pain soon disappears.

I know you’ll cry, “Why him”, “Why us”, but I needed teachers true,
And that is why with care and trust, I’ve selected you.
So please don’t turn you back on him, although he may be slow,
If you’ll accept him as he is then together you will grow.

He needs to learn the skills of life, for that I’ve chosen you,
And with your love to guide him, I know you’ll see him through.
Don’t try to see the future, I promise you that there’s none,
Just live each day for all it’s worth and enjoy my special one.

Dystrophic Epidermolysis Bullosa Research Association

Hi all this is Gavin again reporting on the DEBRA NZ CAMP 2006.

On the 15th of August I left Australia on my way to Auckland NZ where I was picked up by Ashley and Nathan, on the trip to Ash’s house I was holding on for dear life, but we made it in one piece. Ash lives in a little town called Waipu which reminds me of the little town that I lived in when I was young boy.

On the 20th of August all three of us loaded up Ash’s van with our dressings and bags and set off on the six to seven hour trip to the camp which again I hung on for dear life, but Ash said “I am just driving to the conditions” and the conditions got a bit bad at times with heavy rain and driving along the hillside was not my cup of tea.

A bit after 3pm we arrived at National Park a little place consisting of six blocks of little bungalows and about six bigger places that were for people coming to have some fun like us. The place we stayed in was called “The Park” a great big brown place that had just been built, a very cosy and warm place that had a great big fire place in the middle of the formal lounge. That night we all got together and had a nice meal of beef stroganoff and then a meeting about the week’s activities.

On Monday, the week of getting up early started after breakfast, we piled into the cars and went to the local ski shop to rent some wet weather gear. Then it was off to do the OPC ropes course and activities. When we arrived at OPC we got to know our instructors and we did some indoor activities followed by lunch, after lunch we headed for the ropes course where it started to rain again but we stayed and put up with it. A few of us went up the rock climbing wall the normal way and the ones that could not got pulled up by six almost very strong people. As the day went on the rain got heavier and colder a few of us went back indoors to get warm and others stayed and done it all again.

On the Tuesday I was awoken by a knock on my door, I opened my door and stuck my head out to find that it had snowed the night before and that it was still falling and for someone that has never seen snow before it was a beautiful sight. After our very nice breaky we sat around until we got the word that it was OK to drive part way up to the mountain. At about 11am we all piled into the cars and took the drive up to the chateau where we got to play in the snow. We threw snow balls at each other but not to hard to do any damage, some of us tried taking the wheelchairs down the snowy hill, which produced a few laughs as they went head over heels. Anna and Deanna went and got some sleds and we all had a go flying down the hill which was a lot of fun. After we had all tired out we went into the chateau and had a hot chocolate and watched as the snow came down really heavy. After a while we all walked up the road a bit to the visitors centre and had a look around and had lunch. Later that afternoon we went back to our room and did our dressings, followed by tea and a game of Monopoly in front of the fire place.

We also went on a boat ride and to the observatory overlooking the city. Overall it was a great camp and I thoroughly enjoyed it, thank you to DebRA-A Qld and DebRA Australia for making it possible to go. I can’t wait to attend the next camp, stay tuned for more info at the national EB Conference 2007.

Regards,

Gavin. O’Brian (QLD)

Australia Zoo - Dressing conference

Carmel Harris was guest speaker at the DebRA-A Qld Dressing Workshop in May this year. As Carmel lives in WA she took the opportunity to explore some of the beautiful sights on the Sunshine Coast in the 4 days.

One of the sight seeing stops was at the popular Australia Zoo. Sue Holley and her 2 children Alex and Sam, and Barbara (Sue's mother) went with Carmel and her carer Denise for the day. It was a very enjoyable outing with perfect weather, all staff were lovely and very helpful. Carmel stayed on until closing time as there was so much to see. Carmel decided against getting her photo taken with a tiger and cheetah and went with the koala and snake instead. She certainly lives life to the fullest

Carmel with the friendly koala (who was very mindful of its long claws

Barbara and Sue, baby Sam, Carmel, Denise and Alex.
Barbara was the lucky one to hold the head end.
The snake handler assured us that the snake would not eat the baby!
Sam didn't even bat and eyelid - he was probably thinking this is a big teething ring.......

DIAL A HUBBY - Danny Menheere / Burpengary Qld.

Thank you so much for your generosity of handyman work for the Dean and Gavin carried out at no charge.

DebRA-A Qld is a non for profit charity organisation that does not receive any Government assistance. All donations help immensely to assist us to reach our overall goals and objectives.

Debra Queensland - EB Dressing workshop

A dressing workshop was conducted on the Sunshine Coast in May 2006 to introduce DebRA-A Qld members to Molnlycke dressings. 32 people attended the dressing workshop which commenced at 11am to allow for dressing schedules and travel. Of the 32 participants, 9 were members with EB.

Attendees included Sheila Webster from Molnlycke Healthcare, Carmel Harris as guest speaker from Western Australia and Deanna Forsyth, an EB Registered Nurse from DebRA New Zealand. Other participants were made up of DebRA members, family, carers, nurses and friends who helped out on the day. [ Click here for full story ]

The Hagan family

Hello to all. My name is Kathy Hagan and I would like to take the opportunity to introduce myself.

In August of this year, I was elected to the position of president of DebRA Qld at the Annual General Meeting.

I am married to David and together we have a furniture restoration business in Toowoomba. In December 1982 we had a son, Mitchell who was born with Recessive Dystrophic – generalised. Mitchell attended Primary & Secondary schools with the assistance of teacher aides. After his schooling Mitchell did voluntary work at a bank and as well, taught computer skills at his former primary school.

At the age of 4, Mitchell had his first of many operations on his throat and hands. Unfortunately, his final operation was an amputation to his left arm above the elbow. The operation was a result of SCC, which ultimately led to his death at the age of 19 on 3^rd January 2002.

Mitchell was an inspiration to all that knew him and naturally David & I were so proud of him and his resilience. Now that Mitchell has gone, I have the time and the need to give something back to DebRA after the support they gave us with an air conditioner and assistance innumerable dressings. It was such a relief to have members of DebRA in support for their information and pastoral care.

As President of DebRA Qld, I am freely available to assist you. Please do not hesitate to contact me. E-mail: hagfurn@netspace.net.au

Donations

In 2006 there were numerous donations from supporting members and other members of the community that DebRA-A Qld is sincerely grateful for. Some very generous donations were given from:

• Frederick Gordon P/L
• African Violet Society Qld
• Mrs Tauber
• Cheryl & Robert Bathern
• Friends and work colleagues of Lisa Anesbury from the national Butterfly Day
• M & T Driscoll

A huge thank you to the Honda Foundation and Rum City Auto for the generous $5,000 grant to DebRA Qld. This money has been allocated to assist with dressing expenses over the 2006 / 2007 period.

The anonymous donor donated further money in the January 2006 to assist members with EB in Australia. This was a wonderful opportunity to help members in need in all states. Through the process of application, the following items were approved and funded for members across Australia:

• Air conditioners x 9
• Specialised dressings from Molylncke (approx. $12,000 worth - members find these dressings the most beneficial to promote healing, they are more expensive than general dressings and not available via the public system)
• General dressings (approx. $2,000)
• Sheepskins
• Lounge chair (feather down)
• Beds with special mattresses x 2
• Electric bed x 1
• Wheelchairs x 2
• Specially made shoes and socks x 3
• Handyman / gardener x 1
• Ceiling fans x 2
• Financial assistance for member to complete counselling course to become EB specific counsellor
• Financial assistance for genetic testing (members baby born with EB and passed away at 2 days old in 2005)
• Laptop x 3
• Printer and cartridges
• Shade cover for playground x 2
• First aid kits for car and school x 2
• Motorised scooter x 1
• Boat motor maintenance (to allow for continuation of love of fishing)
• Gastrostomy feeds x 2
  
  The generosity of this donation was overwhelming, and it has been gratifying to see the money used to help make life easier or more comfortable for our members and their families. What more can we say but THANK YOU to the anonymous donor who also has EB (simplex) and who understands.