Maya is our delightful, resilient, determined, capable and wonderful six year old daughter. She has Diplegic Cerebral Palsy which means the part of her brain that controls movement in her lower body is damaged.
Distorted messages between her muscles and brain cause a condition known as spasticity.
Maya's muscles continuously contract and shorten causing permanent stiffness or tightness in her legs and interfering with normal movement.
How spasticity impacts Maya's life
Maya's movement is clearly restricted by spasticity, simple activities take a lot of effort and concentration, and often she needs help. Dressing, putting on shoes and getting in and out of the car are just three daily activities that are challenging.
She works hard to be as independent as she can, she falls often but she always gets up and keeps going. Despite her determination and effort, Maya's progress is permanently held back by spasticity.
Over time, there is a high chance this chronic tightness will cause pain, take some of her indepedent movement away from her and lead to multiple orthopaedic surgeries.
Currently, Maya's time at school is reduced to three and a half days a week to allow for at least five hours of therapy every week.
But there is something that can help. A lot.
An operation called Selective Dorsal Rhizotomy (SDR) at St Louis Children's Hospital, Missouri, USA, with distinguished neurosurgen Dr T.S. Park.
SDR is delicate spinal surgery that involves cutting specific sensory nerve fibers in the spinal cord and disrupting the signals that cause spasticity. This will permanently reduce the tension and tightness in both of Maya's legs, giving her freedom of movement, improved balance and long term indepedent walking in all environments will be an achievable goal.
It will give her the best chance of living a pain free life without the need for multiple surgeries on her muscles, tendons and joints in the future.
Dr Park is acclaimed for the minimally invasive surgical technique he developed for this procedure. It involves a lower risk of long term spinal deformities; provides a faster, less painful recovery; and is predicted to have better outcomes than the technique surgeons typically use. For this reason, we are travelling across the globe to see him.
We need your help to change Maya's life.
We need to raise $120,000 to cover the cost of surgery, hospital care, equipment, relocating our family to the US for six weeks and intensive rehabilition both in the US and back in Australia.
For any donation you make, we are eternally grateful.