1 year on

Hi everyone

The 20th September 2011 marked 12 months since Judah's open heart surgery and what a different boy we have.  At our last Cardiologist's appointment we were told that while Judah is in 'controlled heart failure', the valve leak now ranges between 'mild and moderate'.  Hearing the word 'mild' was the best thing I have ever heard!  He is continuing to be monitored and we are looking forward to the day when he'll be taken off medication.  He's nearly double his weight and is a cheeky and active 18 month old who spends his time trying to pull Tobias' glassess off. 


September 2011

Tobias' development has been truly remarkable.  In March last year Tobias was still crawling and had 5 words.  We now have a very active 4 year old who runs everywhere and speaks fluently in 7 word sentences.  I would never have believed this is where he would be.

Some months ago I took Tobias for his regular appointment with our Developmental Paediatrician.  Summarising the appointment he said in a disbelieving tone 'He's catching up you know'.  What wonderful words to hear!  He's doing 28 hours of one on one (ABA) therapy a week and working really hard, as are the whole of our wonderful team.  Tobias will need to continue at this rate for at least another year and 5 months by which stage he will be 5 and should be able to attend a 'regular' kindergarten class.

Our current fundraising figure is remarkably $19 315.80!  So many people have come on board to help out with all sorts of fundraising activities.  Our therapy estimate was in excess of $80 000 so it certainly has put a dent in our expenses.  I am constantly humbled by so much generosity and grateful for every bit of help we continue to receive.  We are offering Christmas present donations again this year.  Please see the donation options at the top right hand side of the screen or email me on musatribal@yahoo.com.au

A great win for the Disability Community has been the NDIS (National Disability Insurance Scheme).  While it is still 7 years away, I hope that it will bring Australia into line with many other countries who support the needs of each member of their community, regardless of ability.

Another lovely part of this last year has been spending time with people from the Williams Syndrome Community.  Williams Syndrome is caused by a deletion of about 26 genes from chromosome 7.  This is one of Tobias' other diagnosis.  People with Williams Syndrome are known to have quite extroverted personalities and ease with strangers.  It has been a real delight meeting others with the same diagnosis and their families. Here's a link to a film that has been released recently about Williams';

http://www.embraceablemovie.com/

Dancing continues on with many changes.  My lovely Tribal Spirit sisters Sue Adijans and Ruth Kunde will be moving on in their dance journeys.  They are such lovely dancers, choreographers and great friends and I will truly miss them.  Dayl will also be moving on to live in the US but not for a little while yet.  Over the last few months I have started dancing with the Tribal Jewels from Wollongong.  Jacqui Pepperkamp is an amazing dancer and I'm looking forward to training and dancing with them over the coming year.

Preparations for Tribal & Trance Fest 2012 are well underway and I estimate the weekend will take place over the October long weekend.  Mira Betz is our scheduled international guest and I'm very excited about what she's going to share with us.  Please see http://www.tribalandtrancefest.com/ for futher info.

Cheers

Deb xo



A present for the person who has everything

Our beautiful little 3 year old son Tobias has been diagnosed with Autism and Williams Syndrome.  Autism is a debilitating developmental disorder which affects approximately 1 in 170.  We have been accessing an amazing, intensive program through CARD (Centre for Autism and Related Disorders) for the last 8 months which has made a remarkable difference.  He will need to continue in this program for approximately 2 years with the aim of 'recovery'.  It is certainly possible.

The Australian Government also believes that a minimum of 20 hours per week is required for all pre-school aged children with Autism yet funds only a small portion of this eg. 2 hours a week. 

Tobias' program involves one on one therapy for 30 hours a week which is currently costing $41,600 a year.  We are fundraising to meet this yearly target and are offering the opportunity to purchase therapy sessions for Tobias in the name of another.  This gift will make a very real and valuable difference to our son's life.  Purchases can also be made as a one off donation or as a regular payment.

You will receive a personal card from us describing Tobias' program, who is involved and exactly how your gift will be used.

Please specify if your purchase is a gift and the type (birthday, anniversary etc) or donation.  If you wish to donate a different amount to those listed, would like to make a regular payment or if you would like further information please contact me on; soulfulsista71@yahoo.com.au or 0412 665 129.

Please pass this post onto as many people as you can.  With your help, we may just make it!

Festival fever and broken hearts

Welcome everyone!

Here we are coming to the end of another year and boy, has it been it been prolific.

We prepared for the festival well and truly in advance due to being due to give birth in March.  My first son was born 5 weeks early so was expecting a repeat performance, but Judah held on till the bitter end. As far as births go, it was a pretty positive and peaceful one and he has a sweet and gentle, little soul.

I asked Merilyn Hyde to co-host the festival with me this time so we prepared as much as we could before February.  We were fortunate to have Jacqui Peperkemp, Dani Sansom and Dayl Workman on the festival committee.  Bookings for the All Day Soiree filled in under 3 weeks which I was very excited about.  The All Day Soiree is my favourite part of the event where we get to support our Tribal Sisters in their dance.

On the 1st September, with less than 2 weeks till the festival we received the distressing news that little Judah's heart was in serious trouble.  We spent the next 3 weeks in hospital.  The staff were incredible and helped to put him in somewhat better shape for surgery on the 20th September.  Judah had major, open heart surgery, 3 days in Intensive Care on a ventilator with innumerable tubes coming out of him and somehow we found ourselves home within 7 days.  Simply impossible to believe how a little person can heal so quickly.  He is continuing to astound us with enormous weight gains and his happy little soul is back with us.

Amongst this we held the 3rd Australian Tribal and Trance Fest.  24 workshops were held over the 10th and 11th September at Connect Studios in Parramatta with our international guest Elizabeth Strong running 4.  She is a very sweet person and delightful teacher with isolations to die for.  Workshops held were geared toward fusing international dance forms with tribal elements.

The Red Carpet Night was held in The Riverside Theatres which was completely professional and shmick.  We even had a tv in the green room where we could watch the stage woohoo!  It was lovely to dance with my dear friend Dani Sansom again :o)  We had put together a choreo via Youtube and had a chance to polish it up in between workshops.  There were so many other favourite performances for me but one in particular was Tribal Jewels piano shawl piece. 

The All Day Soiree was a full on but lovely day.  Tribal Spirit danced strongly and elegantly.  Even Sue was able to unwrap herself with aplomb which she became wound up in the backdrop :o) 

Merilyn had put together an exceptionally thorough program and we received lots of positive comments about it as well as the standard of the festival.  A huge thankyou to Dayl who MC'd the Red Carpet Night and All Day Soiree, Dani for running the Market Day, Kim for compiling the All Day Soiree performers list, Jacqui for organising the volunteers, the volunteers themselves and Merilyn for all her work.

Nafoura Magazine ran an article on the festival.  Have a read of the September issue at www.nafouramagazine.com


Since then Tribal Spirit have danced at Oatley Fest (in hurricane like winds), Lugarno Festival, the last soiree held in Macquarie Fields and the Bellydance Expo at Sutherland.  Please keep an eye on my website's 'Watch' page for more info. 

I danced recently with Tribal Jewels at Rockdale's Food & Groove.  I truly love dancing with those girls.  Their technique is exceptional and they have a real community sense about them.  That community sense is the reason I love tribal so much.

Well people, it is time I signed off.  Happy dancing.

Deb x