Brodie and his family at Camp Brainwave in October 2015
Brodie and his family at Camp Brainwave in October 2015

Brodie is five years old and he has a complex, undiagnosed neurometabolic disorder, rendering him physically and intellectually disabled.  Born with the incredibly rare disorder, Brodie is part of a worldwide research project to find the gene responsible.  The symptoms of this complex disorder includes non-verbal, life threatening seizures and completely unexplained hypoglycaemia—making observation of Brodie a full time and vital undertaking.

Brodie and his family – mum Deanne, dad Sean and brother Kye have embraced the Brainwave family and were very willing guests at Camp Jungai in October, held north of Melbourne in the spectacular Rubicon Valley.  As Mum Deanne explains, this camp provided enormous joy and some respite for Brodie and his loving family:

“Camp Jungai was only the third time in five years that we have been away as a family.  Generally it’s just too hard and we are all exhausted by the weekend.  However, Camp Jungai provided a fun and supportive weekend away and we jumped at the opportunity.

When we arrived at the camp we were taken by its stunning location and scenery.  The facilities were lovely and instantly, we were welcomed as members of the Brainwave family.  The warm welcome certainly set the tone for the weekend ahead.

We went for it!  We did canoeing, high ropes, went on a photo rally and attended the Indigenous cultural session and so much more!  Brodie enjoyed the splash in the water and was excited to be lifted off the ground in the ropes.  Such a delight to see him smile.

And Brodie’s brother Kye was embraced by the group and received some much wanted attention that he craves, needs and desires.

To have a weekend away with other families just like us is priceless.  We don’t have to explain anything, the support for each other is just there.

The highlight of the weekend is seeing the smiles, giggles and genuine joy on our children’s faces.  Just like all children, this is what they deserve.  Our life is filled with a roundabout of hospital visits and doctor’s appointments, which is no fun for any child or sibling.  Camp Jungai allowed us to forget all of that for a weekend, breathe in the fresh air and enjoy all the Camp had to offer.  Thanks Brainwave, it was amazing!”

Read more about how Brainwave supports families with equipment here