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Day 1 – Friday.

We left the Kiwi International Hotel at 7am to ensure that we made it to the Airport with plenty of time to get checked in and make it through customs. Fortunately everything went smoothly and we were one of the first to be seated in the plane. The flight over was uneventful with Torben able to watch Harry Potter and the Order of the Phoenix and Tyla able to chose his own movie and play a couple of games. After making it through customs in Brisbane we were picked up for our transfer to the conference venue. This took a little longer than the hour and a half it should have taken. By the time we arrived at the conference venue the boys were both very hot and tired.

Once we were checked into our room and settled we had a little time to take the boys down to the pool to cool off a little with a swim.

Refreshed we headed off to the restaurant for dinner and the start of the meet and great. Thankfully we made it there before the Thunderstorm and rain really hit. It was wonderful to meet up with the other adults and their children who were there for the conference. We sat with Sara and two of her children who were with her. Torben and Curtis both remembered each other from the conference 4 years ago and they had a great conversation about the antics that they got up to last time as well as the things they like to do now. It was during this conversation that Torben had his first seizure and left us with a lot more questions that we hoped would be answered during the conference.

Day 2 – Saturday

The children headed off with their caregivers to the 2 b kids playland and we headed in to the conference room for the days discussions.

Once we had been welcomed in and everyone was seated we started off with a show of hands to see how many people have attended previous conferences. It was great to see that at least 50% have attended one or more and 25% were attending for the first time. Attendance was made up with a combination of the childrens’ parents, other family members as well as Caregivers/Teacher Aides that work with the children on a regular basis.

The first person to speak was Lance Johnston (Director of USA Chapter) he spoke about BDSRA worldwide. Commented on Australian chapter being the most active that he has seen in the world. Talked about how research projects were funded and what was important in research and treatments and how they are concentrating on therapies.

Michael Fietz (Pathologist at Adelaide Children’s Hospital) spoke about carrier testing. He talked about what the chances are that a carrier will meet another carrier and then what the odds are that they will go on to have a child effected by Batten Disease. Also talked about the possibility that if two carriers were to meet and want to have children what options they have available from ranging from amniocentesis and cvs sampling or the option of harvesting eggs and genetically testing them before proceeding with artificial insemination. Michael is also responsible for diagnostic testing in Australasia.

Imke Tammen (University of Sydney) Spoke about how important it is for the Scientists/Researchers to meet the families and the children as it gives them a first hand experience of life with Battens. Imke also mentioned how inspiring it is to attend events like this and just how much more meaning it gives to the work they do.

We had a break and lunch was served.

Back from lunch and David Palmer (Lincoln University NZ) spoke. He has been working with sheep affected with battens to see if it is possible to figure out just when the neurological changes start to take place, what they are and if they can be prevented if caught early enough or if preventing further damage is possible.

Kelvin Shem (Principal at a school in WA) He spoke about wanting to set up a network system for teachers and support staff who work with children affected by battens. He also spoke about the DDA (Disabilities Discrimination Act) and what rights the children have. Spoke about the idea for a Memory Book for down the track when their memory starts to fade to help them remember some fun times or places they went and things they did. He also spoke about an Alternative communications publication (and a couple others) teach and be taught.
We are looking into these and what other options are out there for Torben as well.

Then the City to Surf fundraiser in 2008 (Sydney) was mentioned and talked about a little.

We ended the days formal discussions at that point but the ladies went and did a little therapeutic painting and a little socialising and talking before the kids arrived back form their outing, while the guys went to the bar for guy stuff.

We had a buffet dinner in the evening and Captain Starlight entertained the children while the adults got to talk a bit to each other and enjoy the auctions that raised at least $1500 for the BDSRA. We also got to speak to David Palmer about collecting Brain tissue samples from Torben and seeing if the NZ ethical debate is any closer to being sorted to make this happen when the time comes. We were able to speak one on one with Kelvin in a little more detail about the education-networking program and exchanged email addresses so information can be passed back and forth. Being able to talk to the other families there was invaluable as well.

We retired back to our room to digest the days information and to get some sleep before the next day.

DAY 3

Dr Deepak Gill, Paediatrics Neurologist. (Westmead NSW)
We found this information very informative. Dr Gill spoke about the different types of seizures how they may be triggered and symptoms that we may see.

Explained the theory behind brain activity and why seizures happen. Spoke about medication and the fact that as a person with Battens as their tolerance levels decrease the frequency of seizures increases.

Found it most appropriate considering events of previous day. Also made us more aware that the ‘drops’ Torben has been having may actually be an atonic seizure and we will be keeping an eye on these and documenting any information we believe may be related to these.

Dr Glen Cole (ophthalmologist) reviewed the survey taken at the last conference and presented the results. He also commented on training fellow ophthalmologists on identifying the symptoms of battens for diagnosis and that it is easy to see the differences in the eye to other patients.

A Physiotherapist and Lance Johnstone spoke about how the muscles contract and how important it is to prevent this happening at an early stage. Hydrotherapy was mentioned as being highly recommended for battens patients to help keep them mobile. Also spoke about raspatory massage (percussion therapy) to help clear mucus of the lungs. She also spoke about clounus, how the feet/ leg shake/jiggle and that it is most often caused by the foot angle/position and adjusting this can help decrease/stop occurrences. We will be looking into this for Torben to see if we are able to reduce the amount that this happens for him.

After breaking for lunch we came back in and Dr Sharon Ryan spoke about Oncology palliative care. She talked about how hard it is to get palliative care for children as most places are set up for adults. However some regions do have facilities or if need be can accommodate younger children but this is one area where recourses are lacking.

In Summary
Bloody well worth it!!!

Got lots of information, not only from the ‘expert’ speakers but a lot from first hand experiences from other parents/caregivers. Was also great to see the other children and it was amazing how similar they were to each other often in mannerisms as well as physical appearances. Was also brilliant to see Torben interacting with Curtis and having a conversation with each other about what they both like. Torben and Curtis both remembered each other from a previous conference and talked about some of the antics that they got up to. Was also good to see Torben in a situation where he was one of the ‘normal’ kids and it was the siblings there were the odd ones out.

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