ARARAT - Tatyoon's Tania Moss is a 'silent angel' - a little girl with a debilitating genetic disorder who has made a huge impact on her school community.
Next week is Angel Week, a week for raising awareness of Rett Syndrome and funds for research into this disorder, which is the second most common form of severe mental retardation in females, affecting one in 8500 births by the age of 15.
Affected girls are known as 'silent angels' and develop normally for the first six to 12 months of life, after which development stops and then even reverses. The disorder results in severe disability and for most, impairs speech and mobility.
Eight year old Tania Moss is the daughter of Karen and Garry Moss and has two sisters, Jenny, 12 and Lisa 10.
The three sisters attend Maroona Primary School and Tania is in grade one this year.
Life is full of ups and downs for the Moss family, but Tania's mum Karen said this year her daughter's health has been good with no major problems.
Visiting the pool where she is learning to float with a neck floaty or stand in the pool with the support of water and attending school are highlights of Tania's life.
"School is a huge enjoyment for Tania as she is so accepted and surrounded with peers who love assisting her,'' Mrs Moss said.
This year a board maker program was purchased for the school and has been a great assistance for communication/symbols for Tania and her classmates.
In July this year Tania started attending a respite house for one weekend per month with dedicated and caring staff looking after her.
"Tania's first week in the house I didn't sleep but Tania loved it!'' Mrs Moss said.
"We now look forward to her weekend in the house to do some normal things with our other daughters Jenny and Lisa.''
Tania's school principal Peter Waterman said everyone at Maroona Primary School agreed that having Tania a part of the school community has been one of the best things to happen to the small school.
"While teachers were nervous at first and wondered how they would cope with a severely disabled child, they were pleased to see the school facilities improve as the education department gave support for Tania's enrolment by providing a disabled toilet and ramps and also allowed for the employment of a full time aide,'' Mr Waterman said.
"Parents must also have been a little worried about how disruptive a child like this might be and how much of teachers' time would be taken up caring for a girl with such great needs.''
But within a few short months of Tania starting at Maroona, staff, students and parents had forgotten their fears and begun to realise just what an asset to the school Tania was.
"The children found out quickly that although Tania was in a wheelchair and she couldn't speak as they could, she still was a lot of fun and she could still communicate with them in her own way. They enjoyed pushing Tania's wheel chair or being her special helper at work times,'' Mr Waterman said.
"Teachers found that Tania had a sense of humour and a cheeky way of having fun. They noticed that school was becoming a more caring place and that children were learning many valuable lessons from Tania. Lessons that could not be learned without having someone special like Tania amongst us.
"The whole community has benefited from having Tania at our local school. Always a close community, we have been drawn even closer together when it has been necessary to support Tania and her family.''
Mr Waterman said it has been nearly three years since Tania started at Maroona Primary School.
"No one thinks about Tania as being anything but one of us, just one of the kids who sometimes needs special help,'' he said.
"We are all happy to give her that help and often there are arguments over who helps out. Our small school is a friendly, caring, happy place and we owe much of it to our Rett girl, Tania.''
Professor John Christodoulou, director of the Western Sydney Genetics Program at the Children's Hospital Westmead, has spent 14 years researching a cure for this disorder.
"By understanding better the biology of Rett Syndrome it may be possible to develop special treatments to slow or halt the progress of the disorder, or perhaps even find a cure,'' he said.
Funds are needed to continue this important research that could make such a crucial difference in the life of little girls such as Tania and their families.
The Rett Syndrome Australia Research Fund, which is a voluntary organisation, raises funds to keep this vital research going.
Next week, during Angel Week, the Moss family is co-ordinating merchandise sales in the Ararat region to help raise funds.
Stock this year includes new look ornament Angels for $10, pens $5, lilac Angel pins $5 and gold Angel pins $5.
Angels will be sold at Maroona Primary School and Ararat Health Wise.
So 'Buy and Angel to Help an Angel' next week and help raise funds for vital research into Rett Syndrome.