Every new parent has an inherent knowledge of the natural progression of their child. Baby's first words, first steps, first day at school, even the onset of adolescent defiance is anticipated. For parents of children with BATTEN DISEASE, these visions are drastically altered by this rare degenerative neurological disease.
Today it is the most common neurological storage disease which affects people of all ages, but especially infants, toddlers and school-age children. It begins unexpectedly and leads to early death. Once a walking, talking, active and curious young child who could see the world around them – in as little as a year develops a variety of symptoms which are difficult to explain, such as loss of vision and the alarming onset of seizures. A parent will say “we are proud to have been gifted with their love “but to watch the degeneration of your own child until bedridden is too indescribable for words. Even harder is the knowledge that they will not be with us for long.
To date there are about 36 (known children) from all across Australia suffering this terrible disease.
Batten Disease is an inherited disorder carried as an autosomal recessive gene, which means that if both parents carry the gene, each child has a 25 percent chance of inheriting the recessive gene from both of his/her parents, thereby being affected, or a 50 percent chance of inheriting the recessive gene from one of his/her parents thereby becoming a carrier – resulting in the potential for occurrence in future generations.
Intensive research continues (funded solely by donations and fundraising) and stem cell trials are being carried out (in America) for children with the infantile and late infantile forms of Batten Disease and for the first time in 180 years they may be able to do something about the Juvenile form of Batten Disease. There is no funding to set up this trial and the estimated start up cost is $500,000.00. In today’s world, $500,000.00 is not a lot of money. To many of us, it does seem a huge amount but if everyone joins together, we can make it happen.
Every family's hope is for a therapy that might reverse this disease’s progression and restore their child's neuronal function. At this stage most would be happy with the hope of not losing their child, seeing them suffer without even a chance of saving their life.
We will be having a garden evening on Saturday 23rd February, from 7.30pm with $5.00 donation entry and gold coin donation for cheese and nibbles. B.Y.O. wine and glass. For an evening in the fairy lights gardens. This is open to all, at 10 Gleddon Way, Hillarys, W.A. Contact is: Judy Rosich and Pauline Sibley, Email: judypauline2@bigpond.com
I am working on designing a t-shirt; a friend of mine has started up a new company. She will print any shirt you design or you can have one of there’s’ and if anyone buys one of your shirts the proceeds go either to you or a charity of your choice. Our obviously will go to Battens. All you need to do is log onto fing.com.au .It is a great site. I’m in the process of designing a shirt now. There is already one on there but I think we could have something better. T-Shirts cost about $30 each-ish. Please contact Jane if you have any questions. Contact is Jane Seychell, Email: jane_seychell@hotmail.com
Quiz and Auction night.
Date: 23rd May
Time: 6.30pm for 7.00pm Start
Where: Pooraka Farm Neighbourhood House
Cost: $10.00 a ticket. Table of 8.
Contact Lorraine Colbert on 08 8280 9106 or Email: lorrainec.82@hotmail.com
Newcastle:
Trash and Treasure Market.
Date: 29th March
Time: 8am ish
Where: Tilligerry R.S.L. Club
Tanilba Bay N.S.W
Contact is Naomi Foster, Email:
Mid North Coast
Saturday March 29th 2008
Batten Diseas Awareness Motorcycle Ride
Meet 10am : Moonee Tavern, 10 kms north of Coffs Harbour
Departs 11am: North on the Pacific Highway
Pit Stop Midday: The Great Northern Hotel, South Grafton
Late lunch: South along the Orara way to the Golden Dog Hotel, Glenreagh. All Motorcyclist welcome. Entry to ride with gold coin donation and a raffle will be drawn on ride with all proceeds going to the Australian Chapter of BDSRA.
Contact Alanna on 0432 354 441 Ludo on 0402 044 601 gayko@optusnet.com.au