In 2021, Georgia will undergo her 2nd very significant surgery to correct scoliosis in her spine. Rods will be placed up her spine to correct a 90-degree curve. The surgery is likely to take at least 8+hours and involves multiple highly specialised medical teams. Her recovery is expected to be at least 6-months, with many weeks in hospital and rehab, but hopefully this will go some way to improve her pain and function level.
In late 2018, Georgia also underwent a large operation and had a Baclofen Pump placed.
All surgeries are followed up with specialised intensive therapy programs to rebuild her strength, function and stamina. Multiple surgeries and interventions are just part of the very bumpy road children with CP face in life. It’s very tough, rough, and often very unfair.
Georgia still has a major goal of communication. She is slowly and surely learning the use of her eye-gaze communication system, as well as accessing technology and speech programs through her iPad and head switches. Our hope is Georgia will ultimately be able to tell the world what she really wants, feels, knows, understands, and is interested in. She will be able to ask questions. She will be able to really learn, and ultimately be a contributing member of her community. Most importantly, she will be able to communicate with her friends, family, and community.
Your support will help Georgia make a difference to the world
Georgia had an extremely traumatic birth. She arrived silent and blue and had to be immediately resuscitated and spent her first month of life in the NICU. Her Apgar score was 1 out of 10. She had suffered a huge hypoxic injury (HIE) which means lack of oxygen to her brain, and this meant extensive and irreversible damage to her otherwise healthy brain and body. At just 7 days old she was given the diagnosis of Cerebral Palsy Spastic Dystonic Quadriplegia Grade 5. This is the severest grade of cerebral palsy. Had her birth not been so terrible, Georgia would be a typical teenager today.
This is every parent’s worst-case scenario. Our world imploded, and her tough journey began.
Georgia has achieved more than any medical expert had ever anticipated or predicted, and this inspirational little girl has broken the barriers of common expectation of a child with Grade 5 CP. She literally fought back from the dead when she was born and has gallantly and gracefully fought ever since. Over the past decade, this little trooper has literally spent some 7000+ hours of her life doing formal therapy. You can more than double that number when including the home therapy programs conducted by her family and dedicated carers.
Georgia is now in Year 7 in a mainstream classroom at high school, just one of her many achievements that is well beyond all expectations. She is a happy student and modelling inclusive education. As well as school, she juggles Physiotherapy, Occupational Therapy, Speech Therapy, Conductive Education, Hydrotherapy, and Chiropractic therapy sessions each week. Every school holidays Georgia spends another 60 hours at the NAPA Centre, a world leader of paediatric rehabilitation therapy, doing their specialised Intensive therapy programs. And then there are the regular and multiple hospital check-ups and medical appointments… All of these therapies assist
Georgia to develop skills, and to manage her pain level and keep her healthy and strong.
Every formal therapy session over the past 13 years has averaged between $150 - $190 or more per session. Her equipment needs costs are astronomical: $27,500 for her wheelchair, $8,000 for a stander, $8,000 for a walking frame, $8,000 for an eye-gaze communication device, $5,000 for a hoist, $350 for special supportive shoes, just as examples. Our house also needs specific modifications to make it more “Georgia-friendly”, such as a new bathroom, wider hallways and doors, and ceiling hoists. You do the maths… Disability comes with an enormous price tag sadly. NDIS does help her thankfully, but there are always huge gaps in time, funding and support.
How you can help…
Georgia is needing your support to continue on her journey, continue to grow, continue to learn, and to continue to challenge society’s expectations of children with Cerebral Palsy. We are so grateful for the incredible generosity she has had from family, friends, friends of friends from all corners of the world over the years.
Your support will be utilised for Georgia’s many therapies and equipment needs, which will continue to enable her to make breakthroughs beyond expectation.
Over the years Georgia has developed such strength and resilience. She is wiser than most of us will ever be. She is infinitely more patient. She brings warmth and gentleness to the world. Her smile and laugh are incredibly genuine and powerful. She can light up a room and makes friends wherever she goes. Georgia is acutely observant, listens well and is very aware of her world and everyone in it. She makes considered choices. She loves music, movies, swimming, playgrounds, being out in the sunshine, chocolate, and spaghetti bolognese, and has a wicked sense of humour. She is an awesome big sister. She is a much-loved member of her classroom and whole community. She is her family’s shining light.
Georgia has helped everyone she meets see the world through very different eyes. She tests the system and she is breaking down barriers. She brings awareness and education to all that it is sadly not an equal or fair place for people with disabilities, but inclusion is the only way forward. Georgia is, and will continue to, make a difference in the world.
3 years is a long time, and the next decade will be crucial for Georgia.
The Conn Family truly thanks you for your support for Georgia.
THANK YOU FOR being part of her amazing cheer squad. It means the world to us.