Liv’s Hydrotherapy

Meet Liv, Liv has Dystonia. It started affecting Olivia’s walking just after her 3rd birthday. Before this she was able to walk without any issues. It took a year to get a medical diagnosis and so many appointments for Olivia as even lots of healthcare professionals hadn't come across it. We received a diagnosis in July 2020 and it was utterly heartbreaking. Olivia received Deep Brain Stimulation (DBS) surgery at Evelina childrens hospital (Guy’s and St Thomas London) for her childhood-onset dystonia. Dystonia disrupts the communication between the brain and specific muscles, leading to potential severe disability if not addressed through medical means. Symptoms include uncontrolled muscle cramps and spasms. Parts of your body twisting into unusual positions – such as your neck being twisted to the side or your feet turning inwards. Shaking (tremors), uncontrolled blinking. Olivia’s form of dystonia is generalized, which can affect most parts of her body and progressive, underscoring the crucial need for immediate intervention. Her type does not respond to medication well, so we had one option - brain surgery. DBS is like a pacemaker for the brain. The surgery involved creating two entry points in her skull although Olivia’s ended up being connected as she’s so tiny. Also behind her right ear to place lead wires connected to a battery pack in her tummy. Every few days, instead of plugging into an outlet, Olivia has a small device on her tummy to recharge. DBS surgery is long recognized as a treatment for Parkinson's disease, it has recently become available for individuals with dystonia. In Parkinson's patients, the effects of DBS can be seen almost immediately after the device is activated, notably in the cessation of tremors. For those with dystonia, however, the benefits of DBS unfolds more gradually. The therapy works by reprogramming the communication pathways between the brain and muscles, a process that can extend up to two years before full benefits can be seen. We treaded lightly on a path not taken, aware the surgery was no promise of symptoms release but had very positive report for pain release. And that’s amazing in itself as they say dystonia is the “evil disease” because of how painful it is and you can’t alway see its effects. Yet twelve months on the improvement is unmistakable. The compelling videos and photos of Olivia bear testament to the life-altering impact of DBS. Despite regular trips back to London every month or two for voltage adjustments, the progression of the disorder has met its match in the form of ongoing treatment, which has vastly improved her quality of life. Her team in London have been absolutely amazing and I can’t thank them enough for everything they have done and continue to do for Olivia and us as a family.

Now Olivia requires much needed hydrotherapy to help her build strength to walk. So we’ve created a page to raise money for therapy that could be truly life changing for Liv’s development!

Thank you to everyone whose donated!