Georgia's Mum wrote this:
Genetic research is something that means so much to us.
When Georgia was born she had so many tests and we were left with many unanswered questions. These questions remained unanswered for years.
We were told her life would be very short lived, having so many things presumed wrong with her and little knowledge of her condition and her medical complications.
Georgia defied the odds and has overcome every hurdle.
It took advancements in research, and new testing procedures, to finally tell us what the cause of all Georgia's issues were. This took nearly nine years to finally give us some answers.
Georgia is still a study and still has an un-named syndrome.
We have an amazing girl that wasn't supposed to survive past the age of three, she was born with vision impairment and considered legally blind. Georgia has endured surgeries to restore her eyesight (she still uses only one eye to see, her eyes swap at any given time).
Life threatening seizures are a daily occurrence, yet she still lives her life to the fullest. In no way does Georgia's disability define who she is.
She is a talented young lady who dances and loves to perform, a State champion tenpin bowler, Special Olympics athlete in Tenpin Bowling and Swimming, a guest speaker and disability advocate, a student representative council member at her school, award winning community spirit recipient, NSW Catholic schools "Ched Towns" award winner for Excellence in Sport and her achievements are many more and will continue.
Georgia's full diagnosis is deletion chromosome 15q11-13 (with rare micro-deletion) Neurological genetic disorder, Microchephaly, epilepsy, ataxia, dyspraxia, alternating optical vision (she uses her right eye to look left and left eye to look right, with both eyes never working at the same time and they can switch at anytime), SPD, ASD, Moderate Intellectual disability.
Georgia has many issues associated with each of these, like her joints pop out of place and swell easily... and the list goes on and on...
It's Jeans for Genes Day.
Wear your jeans to show support for our girl, and such a worthwhile cause.
If it wasn't for the research that is carried out, we would not have some of the answers that we have. The importance of genetic research to families like ours is paramount.
If advancements in medical research can provide us, and other families, with hope, for one day finding and unlocking the answers to such complex issues in our kids, it has to be worth the $5 that you will pay for a badge...
Wear your jeans and show Georgia that you care!
We all think Georgia is awesome.
It's a great day to wear your favourite jeans, and throw some money towards a very good cause.
All money raised through Jeans for Genes Day goes to support the research being done at the Children's Medical Research Institute (CMRI). They are researching cancers, birth defects, epilepsy and genetic conditions. They want every child to have the chance to live a long, happy and healthy life.
Did you know... here in Australia, one in twenty kids is born with a birth defect or a genetic disease!
That's 12,000 kids a year.
What a great reason to wear jeans!
The Children's Medical Research Institute has achieved amazing things.
Through the research they have done there, they have: increased survival rates of premature babies, established Australia’s first research unit for newborns, developed life saving microsurgery techniques, and introduced vaccines that protect against a number of potentially fatal or disabling childhood diseases.
I have a lot to thank them for!
This information was taken directly from the Jeans for Genes website:
Where does the money go?
$2 – Fight cancer
A gold coin will buy enough of the crucial enzyme needed to test the blood of one patient for aggressive types of cancers.
$5 – Treat epilepsy
Buy a badge and CMRI scientists can buy a plastic 96-in-one ‘test tube’ to screen 96 potential epilepsy drugs at once.
$10 – Crack the causes of blindness
Our eye genetics group has already discovered 12 genes that cause blindness in children. Ten dollars gives our scientists 200 mini test tubes to help discover more.
$500 – Help cure liver disease
Gather a team of volunteers and help sell merchandise on the streets across Australia and you could raise enough money to prepare a sample of cells needed to develop a treatment for liver disease. Currently the only hope for infants born with this disease is a liver transplant, but CMRI scientists have made a major breakthrough and are on their way to clinical trials in seriously ill patients.
$1,000 – Make a new discovery
Help our scientists test a new drug that could treat cancer, epilepsy or other neurological conditions. A drug we developed to treat epilepsy may also cure kidney disease – an unexpected discovery that has the potential to save millions of people from the need for transplants and dialysis.
If all of the DNA in your body were stretched out end to end, it would reach to the sun and back over 600 times.
There are more cool 'gene' facts on the Jeans for Genes Day website.
And, a big hello to all the kids the CMRI is helping!
(We went with blue colouring today, for Jeans for Genes Day)
All donations over $2 are tax deductible.