Georgia is our 11-year-old shining star! She is a delightful, smiling, engaging, funny, determined, strong, and curly-haired little lady. Georgia also has severe cerebral palsy, which means she is unable to walk, talk, stand, sit, eat, wash, sleep, play, or even go to the loo independently. She requires 24 hour / 7 days a week care and support, 365 days of the year.
When Georgia was born, she arrived silent and blue, and had to be immediately resuscitated. Her Apgar score was 1 out of 10. Georgia had suffered a huge hypoxic injury (lack of oxygen) that had done extensive and irreversible damage to her brain, and 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. This is every parent’s worst-case scenario. Our world imploded, and her tough journey began.
Georgia has come a long way since her very traumatic birth. She literally fought back from the dead, 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 5 in a mainstream classroom at school, just one of her many achievements well beyond all expectations. She is a model student and model success story of inclusive education. As well as school, she juggles Physiotherapy, Occupational Therapy, Speech Therapy, Conductive Education, Hydrotherapy, Conductive Education, Feldenkrais and Chiropractic therapy sessions. Every school holidays Georgia spends another 60-70 hours at the NAPA Centre, a world leader of paediatric rehabilitation therapy, doing their specialised Intensive therapy programs. And then there are the regular hospital check-ups and medical appointments… All of these therapies assist Georgia to learn some skills, and to manage her pain level.
She also endures having to have Botox injections every 4 months (up to 26 needles), as she is a potential candidate to get a Baclofen Pump – a medical pump much like a pacemaker – that will deliver a cocktail of her medications directly into her spine. Her medical team are hoping this will assist to significantly reduce her constant pain. We will know more later this year about this complex operation and keep you informed.
Every formal therapy session over the 10 years has averaged at $150 or more per session. Her equipment costs are astronomical ($17,500 for her manual wheelchair, $8,000 for a stander, $8,000 for a walking frame, $1,500 for a basic communication device, $5,000 for a hoist just as examples). You do the maths! Disability comes with an enormous price tag sadly.
The good news is that all this intervention is working!
Because of her 700+ hours of therapy a year, Georgia is very healthy and strong. She is almost sitting by herself on the floor. She is sitting much more comfortably in her wheelchair. She is taking steps in her walker. She is assisting with transfers and weight-bearing well. The therapy is managing her pain, and has delayed what experts believe are inevitable medical interventions, like hip surgery. It has helped keep her well and out of hospital.
Regular therapy is also helping Georgia strive towards a major goal of communication. She is slowly and surely learning the use of her communication system, accessing technology and speech programs through her iPad and a head switch. Through this she 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 make friends with kids her own age.
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 Level 5 cerebral palsy. We know she will continue to do this.
Georgia is seeking, and needing, your generous support to continue her positive journey, continue to grow, continue to learn, and to continue to challenge expectations of children with Cerebral Palsy.
Your support will help Georgia make a difference to the world.
We will primarily devote your generous support towards Georgia’s many therapies, which will continue to enable her to make breakthroughs beyond expectation.
While focusing on Georgia’s therapy, her other 24 / 7 needs will always remain, so your generosity may also, in part, help provide for her specialised equipment, medical requirements or care, respite and caring assistance.
Over the past 11 years, Georgia has developed such a strength, resilience, calmness and happiness. She is wiser than most of us will ever be. She is definitely the most patient. She brings a warmth and gentleness to the world. Her smile and laugh is incredibly genuine and powerful. She can light up a room and she makes friends wherever she goes. Georgia is acutely observant and aware of her world and everyone in it. She makes her choices. She loves music, movies, swimming, playgrounds, sunshine, chocolate and spaghetti bolognaise, and has a wicked sense of humour. She is an awesome big sister. She is a much-loved member of her classroom and whole school community. She is a delightful friend to many. 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 to the world that it is not an equal place, but inclusion is the only way forward. Georgia is, and will continue to, make a difference in the world.
11 years is a long time, and the next decade will be crucial for Georgia to continue to grow and advance. THANK YOU FOR being part of her amazing cheer squad.
The Conn Family truly thanks you for your support, and GoGeorgiaGo!!!!
To Donate to Georgia Conn, please use the form below. Thank you for your generosity.
Sunshine Butterflies is a boutique, not- for-profit provider that has built a network of flexible services to provide information, support, resources and programs to individuals and families living with a disability in a safe and happy learning environment. Sunshine Butterflies...