NSW Battens Family Meeting

This meeting just occurred in October and brought many families together for a weekend (approx.. 27 children and young persons and 33 adults). Most of the ones attending were new to the ‘battens family’ and then there were a few of us who have met at the previous Oz conferences.  Not all were from NSW,  we had a family travel from New Zealand and two families from South Australia and one from Queensland. We did try to cram a lot in but all activities were together including a visit to the Australian Reptile Park. There was a magician, choppa-motor bike rides, guest speakers and even a skype call to a Battens Researcher in the UK.  We had a wonderful sponsor who made this happen – Network of Caring and you can read their inspiring story at www.networkofcaring.org . Additionally, Camp Breakaway was the perfect location for our get2gether and just handed the keys over to us and was all ours for the 3 days.

Above is a group photo of our extended family:

We look forward to the next possible Battens Family meeting taking place in Victoria – stay tuned!  Here is a summary of the event from a new parent’s perspective, who attended her first Battens Family Meeting:

“September 2011, our 3 year old Katie had her first non-febrile seizure, a month later she had another. The initial diagnosis was childhood epilepsy. 3 antiepileptic meds didn’t work, we started speech therapy as she was a little behind developmentally, seizures were on-going and changing. Katie’s motor skills regressed and she became incontinent. A week of tests in July 2012, saw us get a diagnosis on 20 August. “We have some positive lab results, read these” said our neurologist. Naively we read and learnt she has Late Infantile Batten Disease.

The one positive thing our neurologist did at that meeting was give us Vanessa’s contact email. We have found the Batten’s family, thank goodness for the internet. The doctors aren’t too interested in the journey as the outcome is known, but to be connected with other families is a saviour. As luck would have it The Aussies were having a family meeting in October. “Can we come?” “Of course “ said Vanessa, “bring the family”. So we did, 9 of us went (Brett’s and my parents tagged along too).

We were so fortunate to be part of the get to together – never met such a caring, strong group of people. You forget what the purpose is and enjoy being around such inspirational people. We learnt a lot, cried, shared and made friends.

There were many benefits for us but I will try and summarise them;

• Chance to talk to those who are going through, have been through the journey we are on. People shared everything and showed so much honesty and we learned so much. For us this is important to have the bonds with others in similar situation. The strength, openness and understanding could only have been gotten from being in this group situation face to face.
• Equipment ideas – different country but we have similar health systems and equipment. The need to plan ahead and what equipment each of them liked/disliked. All just their opinions and they were clear on that but gave us some good knowledge and ideas and stressed how important it was to push for things as changes happen suddenly and too often things were provided too late.
• Schooling – guess because Katie is 4 and only just diagnosed I haven’t accepted that this might not be a priority but at the moment it is important for me to be planning for her schooling. There were 2 strong views on this at the meeting but invaluable to hear both sides.
• Health issues – big discussion on issues such as peg feeding, need to care for them with attention to bedding and stroller support.
• Research – we had Imke talk to us and then a Skype chat with Jon Cooper in London. Brett and I have been looking at all these areas of trials with much interest and it was good (but not so great when the reality of where it is up to was clearly spelled out for us), to get it all clarified by talking directly to the people involved. David Palmer was often mentioned for his work in the research and we will endeavour to meet him and his sheep.
• Our children had a fantastic time. They bonded with other siblings, went crazy and saw the “normality” of having a disabled child in their lives. It was invaluable for them and has had them asking questions which are easier for us to answer now we have been with other similar families. Our parents found it invaluable too.

Thanks to everyone out there who shares and helps in this journey.  Best Regards, Lisa, New Zealand.